In our July newsletter we told you about an appeal we had launched through the local papers to help makeover the garden of young cancer patient, Sean Gold.
Despite having his left leg amputated in a bid to stop the spread of Osteosarcoma (bone cancer), Sean wanted to be able to get outside and play football in his garden. The garden of his family home was, at that time, rough uneven ground on different levels.
But, thanks to the generosity and support of individuals and a huge number of local businesses, Sean’s garden was transformed. The ground was cleared, a new lawn, decking and path were laid, a summer house was put up where he could play pool and garden furniture was purchased. We also installed a giant trampoline for him to play on.
In August, Sean officially opened his new garden and many of those who had contributed towards it came to see the end result.
Sadly, Sean died in October. While he was not able to enjoy his garden for long, we hope he was excited about being involved in the project and spent many hours outside watching the progress and chatting with the team of gardeners.
Sean’s bravery and strength of character will always be remembered by those involved in the project and all who knew him.
Many of the young people we support battle with severe or rare conditions. 16 year old Ansh Bhatnagar, gives an insight into how his condition has impacted on him and his family.
Ansh was diagnosed in the first year of his life with Beta Thalassemia Major, a severe blood condition that requires him to have blood transfusions for the rest of his life. His treatment is continuous and he takes medication daily.
Ansh, tell us about your earliest recollection of your condition.
“Having being diagnosed from a very young age, I have not known life without it. The condition means that the red blood cells in my body are unable to function normally, leading to excess levels of iron and haemoglobin present. I didn’t realise that it wasn’t the ‘norm’ to go into hospitals and have blood transfusions monthly and regularly take medication, but it’s not going to stop me from achieving my dreams”.
Ansh, how does your condition impact on your everyday routines?
“Not a lot of people know about my condition, it’s not really something I tend to shout about. Of course my family and close friends know, but I have never seen it as something that would hold me back. When I do go into hospital each month to have a transfusion, I use the 9 hours to catch up on homework or creating computer games, which has given me a taste for becoming a games developer in the future. At the weekends I regularly volunteer at the charity shop before tutoring kids who are preparing to take their exams, as I know that people benefit from this support”.
Ansh, how has the Trust helped you?
“Having received so much support from SAT at a young age, I know from personal experience that the work they do truly makes a difference. My family and I have stayed at The Bluebells and attended lots of events including sleepovers, parties and activity days. The first event I ever went to was a Christmas outing in 2009 to see Peter Pan at the 02 Arena. For me this was a real treat and to spend time with so many people that had similar lives to me made me feel even more at home. Although I am older now, I still regularly assist the Trust’s Youth Support Worker, Katie with events at The Hub and we have recently started organising art and drama workshops. For me, it would be great to see lots of children attending these so that they could share some of the experiences I have found beneficial over the years.
From initially spending time helping out at The Hub, I have since become involved with the Trust’s Youth Council and am now the Chair member. This is something that I am particularly passionate about as all the members are either suffering from a condition themselves, or their brother or sister is battling an illness, or they may be bereaved. We have either stayed at The Bluebells or attended adolescent activity days, so we use our personal experiences to influence decisions and make recommendations on how SAT can give young people a service that meets their needs. Some of the things we are implementing from our suggestions are as wide ranging as out of term events, career support sessions and healthy eating workshops. For me it was essential to suggest more practical support for those that miss significant periods of school life, as I have had a number of operations whilst being at school and feel that it would be really beneficial to provide purposeful assistance for children needing help to catch up.
One of my favourite things we have introduced is a newsletter for all teens that are supported by SAT. It took a while to think of an appropriate name, but after much deliberation ‘Azure’ was chosen. I think this name really stood out as it has connotations of the sky on a sunny day and that is the feeling we want to convey to the reader when reading the magazine.
Another way in which I have tried to continue my association with the Trust has been through encouraging others to learn about the Trust. Last year my college took part in the National Citizen Service scheme, which gives 15-17 year olds the opportunity to get together and try new things by delivering a project that makes a real difference. I successfully nominated SAT, which resulted in a team of 9 from NCS coming to The Hub before it opened to help build furniture and get the place up and running. My team were really happy about working with a charity that contributes directly to our local community. I was so grateful that I could give something back after receiving so much support over the years.
A personal highlight for my mum Rekha and I was when SAT invited us to attend Number 10 Downing St at their reception last year. I was pleased to be with other members of the Youth Council as we all got to enjoy and share the same experience. I felt honoured to meet Samantha Cameron and tell her more about the great work SAT does”.
Ansh, what does the future hold for you?
“Keeping my condition at bay through regular treatment will be part of my life forever, but I am intent on going to university. Nothing will get in the way of my dreams!
Hollie- Forever five
Being at close hand with families throughout the journey of their child’s illness is always a privilege; here we look at our relationship with the family of Hollie Oxenham.
When in February 2013 Hollie, a previously healthy, active four year old, began to complain of headaches and appeared unsteady on her feet she was initially treated for a virus. Six subsequent hospital visits took place before Hollie was eventually diagnosed on the 1st May with an inoperable brain tumour, known as a Bilateral Thalamic Glioma. Although indications from the outset were extremely poor Hollie’s parents, John and Louise, never asked for a time prognosis as they always wanted to live with the hope of a cure. The following weeks, then months resulted in a “new normal” revolving around hospital life in London, miles away from the family home in the Berkshire town of Bracknell, initially for a biopsy, then for attempts to drain fluid from the brain before a shunt was fitted. Infection of the wound site and CS fluid complicated matters further, which meant a further delay to the planned months of radiotherapy and chemotherapy.
“At this point our world had been turned upside down, but we had to cope for Hollie’s sake" explains Louise. Trying to retain a sense of normality was important for Hollie but also for her baby sister Emily and big brother Lewis. "We tried to do as much as we could whenever Hollie was well" continued Louise "we crammed in as much as possible to create precious memories".
In spite of the devastating diagnosis and rapid deterioration Hollie continued to bring sunshine, smiles and much merriment until she drew her very last breath. Time spent with Hollie always involved laughter, giggling and lots of affection- she was an articulate, confident little girl who enjoyed ballet lessons, trips to Legoland, having her nails painted, lunch at McDonalds and storytelling at the library with her grandparents.
Helping families to build memories is something the Trust sees as a priority. Hollie and her family became known to Sebastian’s Action Trust early on in her treatment; they first enjoyed time at The Bluebells in August 2013 as an extended family with Nanny Carol and Grandad John, as well as attending events like our Christmas party and Easter Egg Hunt. Wellbeing therapy came to Louise as well as Hollie and sister Emily, allowing a relationship to develop that made us privy to the Oxenham family during their most difficult days. When it became apparent that Hollie really wanted to be a bridesmaid for her mummy and daddy the Trust was able to help with the hastily organised Oxenham family wedding-such a happy occasion in spite of the worries of Hollie’s rapidly deteriorating condition. No-one present on that glorious March day will ever forget the beautiful sight of Louise, Emily and Hollie arriving to meet John- the beaming smile on Hollie’s face as she scattered petals as she entered the ceremony, or the poignant picture of her cuddled up with her daddy throughout much of the wedding breakfast.
A week before her death the Trust's nomination saw Hollie crowned Bracknell’s Child of Courage-a small way in which recognition could be paid to her incredible bravery, resilience and grace in fighting an impossible battle.
Tragically, Hollie died on the 29th April 2014- at home, peacefully, in the arms of her parents. Just one year separated a life full of promise, hopes and dreams and the worst fear of every parent.
Being asked to write and deliver the eulogy at Hollie’s funeral was both an honour and a responsibility that was not undertaken lightly.
Support for the Oxenham family continues for immediate and even extended family members. We recognise that learning to live with loss and a lifetime of missing is highly individual, so our efforts are never prescriptive but tailored to the needs and wishes of each particular family.
“The Trust has been, and continues to be, incredibly supportive. They have helped us create memories that we never would have imagined. Always with a smile and shoulder to cry on, they have gone above and beyond anything we thought possible” -Louise.
A number of the young people we currently support battle with kidney disease. Here three families give an insight into how renal failure has impacted on their lives.
Claire Hills tells us about her son Michael:
Michael is 12 and was diagnosed in October 2008. Although treated initially with medication, he slipped back into renal failure in February 2013.
Michael has a Haemocatheter inserted into his chest for dialysis and a gastrostomy (feeding tube) as he needs to get his nutrition through a milk feed. To get him ready for a transplant he has had both kidneys removed and is now on the transplant waiting list.
Michael travels to hospital three times a week for Haemodiaylsis, which lasts four hours each time. Michael is also fluid restricted so he has his overnight feed and is left with just 100ml left to drink each day. He loves sport but cannot play any contact sports. At night he has his feed so sleepovers with friends are rare as people don't understand the feed equipment and fluid restrictions. Hopefully surgery will give Michael a working kidney. We are on standby in case a deceased donor is found for transplant.
Day visits to The Bluebells have enabled us to swim together for the first time as Michael doesn't like to use a public pool. It gives us time together away from home.
Both Michael and Charlotte loved the sibling sleepovers; Michael didn't have to worry about people wondering why he was in a drysuit in the pool or watching a DVD whist attached to his feed pump!
Angela Kinrade tells us about her daughter Amy:
Amy was diagnosed in 2008; she spent four-and-a-half years on dialysis before having a transplant 16 months ago. Her treatment is continuous, and she will always have to take immune suppressive drugs.
The immune suppressive drugs make her vulnerable to getting sick and the steroids make her moody at times. Having been on dialysis for so long she missed a lot of vital schooling and is now far behind her peers, but she's working hard to catch up. Amy doesn't get invited around to friends’ houses because people are just too afraid to deal with a different child. Despite all this, Amy is a very strong, confident and loving child. She doesn't let her illness get in the way of life; she just gets on with whatever comes her way.
We decided to leave our home in South Africa for the UK to give Amy a better chance of survival. This meant leaving all our family members behind so there is no family support here in the UK. The stresses of everything also caused my marriage to break down. Amy's older sister, Jessica, has suffered a lot. She has had to fend for herself from an early age when I've been in hospital with Amy. As a mother, you can never get rid of the guilt even though you know you had no choice. The relationship between Amy and Jessica has been strained with Jessica resenting Amy for all the changes that have occurred in our lives.
Amy's kidney will eventually fail, we just don't know how much time we have. When this happens she'll be back on dialysis waiting for another kidney.
The charity has been a breath of fresh air in our lives. The support is amazing and spending time at Bluebells is a home away from home. It's a place where we can spend quality time together without the stresses of life constantly knocking at your door. It's a time to just forget for a while.
Mary Bartlett tells us about her son Evan:
Seven-year-old Evan was diagnosed in March 2012 with end stage renal failure from an unknown cause. He had a transplant eight months later with a kidney donated by his father, Paul. Life now involves hospital visits associated with the problems that come from being immune-suppressed. Hopefully Paul’s kidney will last for 10-15 years so dialysis and further transplants will no doubt be part of the future.
The Trust has given us a stress free week together and so many things to look forward to throughout the year.
Isaac’s mum Claire tells the family’s story:
Tell us about Isaac:
Isaac is four-and-a-half. He has unexplained Significant Global Developmental Delay, meaning he has severe mental impairment and limited mobility. No one really knows why. He has very little understanding of the world around him, is not expected to learn to speak and understands nothing we say. He’s been hospitalised many times with respiratory distress.
How did you discover Isaac’s condition?
Three years ago I walked out of a paediatrician’s office, feeling like I’d been hit by a bus. I’d been right; Isaac wasn’t just slower than his older siblings. Something was very wrong and it was never going to go away. We felt loss, inexplicable guilt and overwhelmed by the impact this would have on our lives. We felt alone and just not up to the task.
How do you feel about the support available to you?
There are charities to help many specific disabilities, but when no one knows quite what is wrong with your child and why, you are left feeling you fit nowhere.
How has the Trust helped?
Nearly a year into our journey we found the Trust. I was searching for sensory resources to stimulate Isaac. They had a sensory room, hydrotherapy pool and sensory garden. I expected occasional use of their facilities, I wasn't expecting them to take our family as a whole and hold our hands along our journey. They bowled us over offering us a free short break at The Bluebells - time out together when life felt hard, in an accessible building, with ideal facilities for Isaac that his siblings could share.
What has been the biggest help?
What means the most is the care and attention the Trust has lavished on Isaac’s big brother Josh and sister Miriam who deal with a lot. They need a turn to be the special ones. I cancelled their birthday parties last year because Isaac was the sickest he’s been, one step away from induced coma.
Miriam had a Girls’ Sleepover at The Bluebells, an outing, her nails done and took part in a girly talent show. They also provided a course of music therapy that helped Miriam explore feelings about how family life had changed and did wonders for her confidence. Josh attended a Boys’ Sleepover and hung out with other kids with disabled or seriously-ill siblings.
What is different about the Trust?
They take a family as a whole unit and see the far reaching affects of illness and disability. My children are celebrated and supported in their own right.
At The Bluebells, I don't have to apologise and make excuses if my non-verbal child screams out, throws paint at the art therapist or soils the sheets. We can be us, within a supportive community that cares about us as a whole.
Nina’s mum Aga tells the family’s story
Tell us about Nina:
Nina was born on 21st February 2012 in Krakow, Poland, and although seemingly healthy at birth, we noticed within the first month that she was not feeding well and was always sleepy. When she was five weeks old she was admitted to hospital, but it was three weeks before an initial diagnosis was given and during this time her condition worsened. As you can imagine, this was torture for us as parents. Nina was initially diagnosed with lots of different infections, including bacterial pneumonia in both lungs and Severe Combined Immune Deficiency (SCID).
What options were you given for Nina’s condition? The Polish hospital felt the only option available to them was a bone marrow transplant which, combined with the initial misdiagnosis of the exact form of SCID, could have proved fatal. Faced with this stark choice Graeme, Nina and I spent the next four weeks living in a sterile bubble, whilst a donor was sought, as there wasn’t a suitable match within our family.
What brought you to England? Although a Polish donor was found, we researched every option available to us and through Graeme’s health insurance we were able to access treatment for Nina through Great Ormond Street Hospital. Nina was flown in an emergency evacuation jet from Krakow to London and transferred to GOSH by air ambulance.
How did life change on arrival in England? For Nina, the biggest change was physical interaction as she hadn't seen full human faces for first three months of life, except for a glimpse of our eyes over the top of our face masks. We lived at GOSH for three months whilst they retested Nina’s blood and came up with a more precise diagnosis - which showed that her form of SCID was from a missing ADA enzyme. This changed everything as it gave another option for treatment, which is gene therapy.
How does this diagnosis affect daily life? At the moment Nina is totally dependent upon weekly injections given at GOSH for the missing ADA enzyme; and imunioglobin transfusions which give her the antibodies her own body is not able to create. The treatment is not available anywhere else as it is so specialised so the weekly trips to London are essential. We have to avoid contact with other children in particular and our home has to be scrupulously clean, to avoid infection.
What does the future hold for Nina? If all goes well Nina will have the gene therapy in April. Nina will be one of the youngest children in the UK to undergo gene therapy. If it is successful it could be totally curative.
How has Nina’s condition impacted on your family? We spent months separated from Mia, our elder daughter, who stayed in Poland with my mother whilst we were in isolation and then in GOSH. Mia still can’t attend nursery because of the infection risk, which is very hard for a three-year-old who craves social interaction. We have left the home we built in Poland but at the end of the day Nina’s health is our priority.
In what ways has the Trust supported your family? Helping with the weekly journey to GOSH has been literally life-saving for Nina - without her weekly enzyme injections she wouldn’t have an immune system. For Mia being able to attend the Halloween and Christmas parties at The Bluebells were the highlights of her year - she absolutely loves Bluebell Bear! Being able to meet other Mums through Chill & Chat is a bonus too; I don’t have any social life so this gives me a chance to be with others who face equally challenging times.
“We are eternally grateful to Sebastian’s Action Trust; as our extended family support is very limited and they have given us a lifeline when we needed it most”.
Older sister to Evie Shallom, Ruby tells us about the support she and her siblings have received from the Trust.
Evie has Hodgkin’s Lymphoma, which is a blood cancer. It starts in the white blood cells called lymphocytes, which are part of the immune system. It is known as an adult Cancer; very few children are diagnosed with it.
Although it is one of the most curable cancers with a 95% success rate, sadly for Evie her first round of chemo and radiotherapy were not successful and she is now being treated for relapse Hodgkin Lymphoma. Evie is now waiting a bone marrow transplant in a couple of weeks, which will hopefully replace her immune system. Evie has shown herself to be a very strong and brave girl and we are extremely proud of her for getting on with her treatment.
How were we introduced to the Trust?
Our family was introduced to the Trust by Jane, Sebastian’s Mummy and the CEO of the charity, at the Pride of Bracknell awards evening. We were also told by other parents that have heard of the charity.
We have been supported by the charity for just over a year now. We couldn’t be happier with the amount of support they give, to not just Evie but to the whole family!
Our family is supported by Kelly, who is an Outreach Worker and Katie, a Youth Support Worker. They both give the whole family support in many different ways, visiting us frequently offering advice, support and friendly chat.
Kelly often comes with Wellbeing Therapists Jan or Carole offering treatments to both Evie and Mum.
A bit about me
I am Evie’s sister and I am a member of the Trust’s Youth Council. Every few months we get together to share ideas on how we can improve the charity and identify other ways siblings can be supported. For example we have introduced teen pamper days at the Trust’s hub in Slough. It was an amazing opportunity to meet other girls who are going through similar situations.
In my spare time I enjoy shopping, horse riding and a little bit of modelling. I modelled in a fashion show which had been organised to raise money for SAT It was such a fun day doing what I love to do for an amazing cause.
Sadly when Ella Henderson visited the Hub (pages 12 & 13) I was in hospital, but Evie and my Mum were able to meet her. Ella was so lovely; as soon as she heard that I was in hospital and upset about missing the chance to meet her she sent a video message. It was so lovely and cheered me up so much in hospital! She also followed both Evie and I on Instagram and often messages us both to see how we are.
How the Trust has supported me and my siblings
I can’t imagine where I would be without Sebastian’s Action Trust because when I need support it is given to me. The Trust has helped us so much as a family and I know it will continue to do so. I’ve become very close friends with another sibling and we give each other support when needed. I’ve enjoyed all the events and activities that I’ve participated in and love meeting new people from the Trust.
My siblings and I have benefitted from taking part in different activities such as African Drumming, pizza making and cupcake decorating with Martha.
In November the Trust was able to help create a memorable day out for a very special little girl and her family.
Through our contact with photo-grapher Alistair Morrison, we were able to help put six-year-old Tayla in touch with her pop hero Shayne Ward, who telephoned her at home and sang to her to get her special day started.
Tayla and her family were then collected by a bright pink stretch limousine and taken to London to see The Lion King, where she was able to meet the cast. The family were treated to dinner at the Rainforest Café before being picked up and taken home via London’s Christmas lights.
Sadly, Tayla lost her battle against neuroblastoma on December 23rd. We will remember Tayla for her love of all things pink and sparkly, her big brown eyes, her sense of style and of course her courage.
Marcie and her family have been friends of the Trust for several years and we have been delighted to arrange a few special trips out for them, one to see X-Factor, where Marcie met some of the stars including Simon Cowell, and one to see the West End Show Wicked. Sadly, Marcie Loader died on Monday 5th October 2009 after a long brave battle with cancer. Her father James said: “She was the bravest little girl that I’ve ever met. We will miss her so very very much forever.”
Here is just a small part of Marcie’s story - a piece we featured in our Autumn 2007 newsletter – which details just some of her experiences.
Just months after she was diagnosed with Ewings sarcoma (bone cancer) 12-year-old Marcie Loader was told she had a second cancer – leukaemia. Here Marcie and her mum Justine tell their story.
Marcie said: “After a weekend down at Uncle Stevie’s house near Bath, I started to get really bad pains in my right foot and shin. After a couple of trips to the doctors, I went to see my friend Doug Penn, a wonderful ‘back man’, who told my mummy there was something ‘seriously wrong’ with my back. He spoke to our doctors who agreed, and referred me to the Royal Berkshire Hospital, in Reading.
“I stayed in Reading for a few days, while they did loads of tests on me. I met some excellent people including the big rugby-playing consultant Mr Sean O’Leary. I saw him on 7th February, and he told mummy and daddy the MRI scan had showed that I had a growth, the size of a snooker ball, in my spine, at the very bottom, in the sacrum (just above the coccyx). He said the tumour was malignant which means it was a dangerous one, a cancer which will carry on growing until I go pop basically, so it needed to be stopped.”
Marcie began chemotherapy and the family became used to frequent hospital stays. But after just a few months of treatment they were told Marcie had developed leukaemia – a known but rare side effect from one of the drugs used in chemotherapy.
Marcie was referred to Bristol for a bone marrow transplant, which was followed by three weeks in isolation, during which she was not even allowed to see her younger sister Amelia, for fear of getting an infection.
Marcie said: “You weren’t really allowed to wander around; you had to stay in one room for ages. I missed my friends because they didn’t really come to see me in hospital, but they rang me a lot.” Details of Marcie’s website and the hospital address were sent out to friends and Marcie said: “It was nice to receive things, especially after the bone marrow transplant, because we were stuck in that room.”
Justine and Marcie’s Dad, James, took it in turns to stay with her, swapping every 24 or 48 hours so there was always someone to take Amelia to school. For Marcie among the hardest things about her illness was losing her hair. Justine said: “She was walking down the hallway one day – a bag of bones with no hair and ears sticking out – and we said, ‘Marcie you really look like Dobby’ (the elf from Harry Potter); – she was broken hearted.”
Marcie’s hair has now grown back – but brown, not blonde as it was before – and she has developed freckles, which her family joke must have come from her bone marrow donor.
Another difficult thing Marcie said is that she finds it harder to run around now. “As much as she’d love to go off and do netball matches with everyone else it is hard work.”
“I think she finds school very stable; they are lovely people, they are supportive all the time – no one questions her,” Justine said.
Marcie hated having a Hickman line (a tube inserted under the skin through which she received treatment), which meant she could not have a bath, shower or swim for two years, so when it was removed she celebrated by throwing a party at the school pool.
Another hardship was the restricted diet during treatment, when she missed Chinese takeaway most. Marcie is now looking forward to getting to know her baby brother, finding a new school for next year and catching up on the holidays and activities missed over the past three years.
The family has found support from friends and family invaluable and Marcie would like to thank everyone, especially her friends Henny, Poppy, Jessie and Weezy. She added: “I am staying very well with no symptoms at all for a while – all thanks to the wonderful Dr Kate and her team, and a new drugs regime. I do still need regular blood tests at Oxford – Denise is there and she ALWAYS gets a vein, which is great! What with my cute new brother and a new school year, I’m really looking forward to the next year!”
Jason Westfallen is four years old. He has an infectious laugh, likes Spiderman and lives in Slough with his sister Shannon aged 7, Mum Donna and grandparents.
Five months ago he was diagnosed with Myeloid Dysplasia and Monosomy 7 – a precursor to acute myeloid leukaemia. Here Donna tells their story:
Jason was diagnosed with immune deficiency in 2006 but his response to treatment prompted further tests and the diagnosis of the extremely rare condition which was symptomatic of leukaemia.
Donna said: “I was gutted. When they called us in, it was the way the doctor was with us, I knew there was something not right. I was up at the hospital on my own, so my Mum had to come up.” Jason needed a bone marrow transplant, but tests showed Donna, Shannon and Jason’s Dad were not suitable donors, and they had to rely on the Anthony Nolan Bone Marrow Trust’s register of volunteer bone marrow donors to find a suitable match.
Donna said: “They thought they had found a donor to begin with and then they said it was not good enough. On November 22nd we went to Bristol Children’s Hospital for three days, that’s when they confirmed they had found a match. On Tuesday 12th December we went back down to Bristol. He started chemotherapy on the Thursday and then the bone marrow transplant was on December 20th.
We were there a day under six weeks – not that I was counting!” Donna and Jason spent Christmas in isolation at Bristol, leaving Shannon at home in Slough with her grandparents. Due to therisk of infection they were only allowed three adult visitors and initially even they could not visit because they all had colds.
Donna said: “I wasn’t allowed to eat in Jason’s room and Jason didn’t want me to leave him so during the week I survived on drinks. It wasn’t as boring as I thought it was going to be because there was always something he needed; I had to keep him entertained which kept me entertained. I didn’t know which day it was or anything. I used to look forward to going out of the room to the loo!”
“My Mum and Dad came up most weekends with Shannon. She wasn’t allowed on the ward. She had a little chair outside the ward door where she waited for me to come out, after I’d got changed, to see her. It was difficult. It was really hard for her because she didn’t see Jason for the six weeks, also because it was Christmas and she didn’t have us there.”
When Jason and Shannon were allowed to see each other Donna said: “It was like something out of a movie – they ran together with open arms.”
“Christmas felt like a normal day to me. Father Christmas came in to see Jason in the morning and woke him up; Jason opened his presents and then slept for most of the day because he didn’t feel well.”
Following the transplant Jason had a complication called graft-versus-host disease where the new cells fought Jason’s own tissues. Consequently his condition is regularly monitored.
Life for Jason’s family has changed dramatically in the past six months and is now governed by doing everything possible to make Jason better. He is currently unable to mix with lots of people due to the continued risk of infection.
Donna said: “We can’t go out and do things together. We’ve got birthdays coming up – Jason’s is this month and Shannon’s is in April and we can’t have birthday parties. We are thinking of having a bouncy castle for them later in the summer.”
Donna and Jason travel to Oxford’s John Radcliffe Hospital twice a week for blood tests and to Bristol Children’s Hospital once a month. A community nurse visits everyday to administer antibiotics and sometimes take blood.
Donna said: “Everyday around 9am he has all his medicines; on average he has five or six a day, at weekends sometimes more. Jason is not allowed to go out until April so we are watching lots of DVDs at the moment. Lately he’s been saying he misses his friends at school.”
Waiting to find a bone marrow donor and being in isolation Donna said were particularly difficult for the family. But returning home after having the support of nurses day and night for six weeks if something went wrong, and waiting to see if the transplant has worked are a continual worry.
She said: “Just before we left Bristol we were told he would more than likely have to have a second transplant. We are hoping that he doesn’t. It’s just a guessing game at the moment.”
Christmas can be a difficult time for any family with a very sick child; it is undeniably worse when the prognosis is terminal. For the family of six-year-old Jack Kyte, the devastating news that their son’s cancer could not be cured was understandably heartbreaking.
The Trust had established a link with the family through its pampering sessions at Wexham Park Hospital. Through the generosity of a friend of the Trust, a treat was organised for the family – passes to a special premiere of the hit film “Alvin and the Chipmunks.”
When Jack’s parents wanted to bring Christmas forward, to ensure that the family could have one last Christmas together, the Trust helped by providing the works – the full festive meal, presents and other groceries to alleviate some of the financial pressures burdening an already exhausted couple.
When Jack died, on 5th January, the Trust helped with organising the funeral and providing support. Jack’s siblings spent time at the Trust making candles and pictures for the funeral, helping to design the service sheet and compiling albums featuring favourite photographs of their brother and poems they had written.
Through Reflections, the Trust will continue to offer friendship and support to Jack’s family.
All about me
My name is Charlie Edward Crick. There are four of us in my family - my mum is Joanne, my dad is Ted and my sister is Lauren. We have a dog called Peggy Mitchell; she’s a miniature Schnauzer and I chose her name because she reminds me of the character in Eastenders. My favourite colour is red and I love playing computer games, going to the theatre and horse riding, which I do through my school with the Riding for the Disabled charity. I’m a big fan of Hawaiian pizzas and cheeseburgers and when I grow up I’d like to be an actor. I’m thinking about joining a drama group – I might be discovered as a future star of the West End stage which would be fantastic!
Laughter clearly plays a big part in the life of Charlie Crick. Whether it is engaging in a double act with his dad, repeating anecdotes from his favourite performers or talking about life in general, this young man has a talent for amusing others.
There is no clearly defined label for Charlie’s medical condition; he was born with multiple heart defects which kept him hospitalised for his first year. He has endured at least one major operation for every year of his life and he is literally covered in scars from the many other procedures he has endured. Charlie also has Scoliosis and Kyphosis (curvature of the spine), which requires him to wear a brace to support him throughout the day. In 2005 he suffered a cerebral (brain) abscess; medication to treat this has led to Charlie developing reactive arthritis, which results in stiff joints and the need for a wheelchair to aid mobility. Every night Charlie receives a cocktail of medicines, which are fed through a special tube fitted to his stomach, together with a nutritional supplement which helps to maintain his body weight.
Charlie joined us on our Activity Day on the Isle of Wight. Although his wheelchair and oxygen canister were never far away, he really enjoyed being able to bump along on a tractor, play on the swing-tyre and ride on the chairlift with the other children and helpers. It was a big leap of faith for his truly devoted parents to let their son join us for this special treat and we hope we will be able to find other ways in which we can support the Cricks, who have all endured so much in helping to give Charlie a full and active life.
The Trust first got to know Vanessa and her family in 2008 and our team have seen her grow into a lovely teenager. Vanessa and her sister attend our activity days and we continue to be there for the whole family whenever they need us.
In September 2008 Vanessa and her family allowed us to tell their story for our newsletter:
To the outside world Vanessa Sizya appears an ordinary, healthy 11-year-old with a shy but extraordinary smile that lights up her face. The only clue that this might not be the case is the colour of her eyes.
To her family Vanessa is a very brave young girl and they are incredibly grateful to the National Health Service (NHS) that she is alive. Vanessa has sickle-cell anaemia, a condition most common in people of African origin, which restricts the movement of blood through her vessels.
Vanessa said: “People ask me when I have a cold, ‘Why are your eyes yellow?’ I say, ‘I have sickle-cell’. They say, ‘What’s sickle-cell?’ I say, ‘It’s a disease in your blood, but you have to be born with it.”
Vanessa suffers from ‘crisis’ – periodic attacks of pains in her stomach, back and joints which can be caused by colds, infections, changes in temperature, the weather or anything affecting her blood and circulation. It is so painful she can not sleep.
Vanessa said: “When I go swimming I’m not allowed to spend a lot of time in the water because when I get out I start catching a cold.” She has been advised not to swim, but she loves swimming and her parents want her to have a normal life.
Vanessa takes antibiotics and folic acid daily and visits the hospital three times a month, more often if she is unwell, for a blood transfusion, blood tests, and monitoring. Each time Vanessa has an infection she is admitted to hospital for up to two weeks. Her Mother Martha said: “She’s really strong. Vanessa’s going through a lot of pain every month; I know I wouldn’t be able to bear it.”
Vanessa was born in Tanzania. Her father Ben came to England to study in 1999; Vanessa and Martha followed in 2004 when Vanessa was six. Two years later she was diagnosed with sickle-cell after a visit to her GP with a cold led to tests because her eyes were yellow. That year Vanessa had a stroke; her parents learnt she had already suffered three minor strokes they knew nothing about. They fear another stroke could leave her paralysed.
Vanessa’s diagnosis was heartbreaking for her parents – their first child died suddenly of sickle-cell in Africa, aged two-and-a half. It was only then that the couple learnt they both carried the disease. Fortunately, their other daughter Keziah does not have sickle-cell, but she is a carrier.
In Tanzania, Martha said, children with sickle-cell rarely reach the age of seven so the family are incredibly grateful to the NHS: “We are really thankful; we don’t even know how we can repay them. Here we are getting free treatment, how can we say thank you? If I hear people complaining about the NHS I feel like saying, ‘I wish you could go to our country, they don’t have what you have here.’”
Martha and Ben had intended to return to Tanzania with their family to start a tour company but doctors told them Vanessa would not be able to have the transfusions she needs there because of the problems Tanzania has with HIV and lack of safe blood.
The fact that Vanessa was not diagnosed in Africa, where she could have been treated with infected blood, may have saved her life.
Vanessa’s condition means she misses a lot of school, but also that her parents frequently have to take time off work. Martha had to give up her full-time job and now works 23 hours a week as a support worker – she hopes to become a nurse. When possible, Martha works extra hours to compensate for times when Vanessa is ill and she is unable to work. Ben works four nights a week as a carer. As the family’s sole driver, Ben has to take Vanessa to hospital. He said: “Sometimes I have to leave my job to attend Vanessa, because Vanessa comes first for us. If I stay away from work for two days I’m losing salary.”
The family is not entitled to benefits. Martha said: “We are just so thankful being here. We came here to work and earn our living. Our visas say we are not entitled to public funds; just Vanessa getting treatment is enough. As long as we are working we have access to the NHS.”
Because Vanessa’s condition is rare in the UK she does not have other children to talk to about it or compare herself with. The family take hope from middle-aged sickle-cell sufferers they know of in this country: “It gives us hope that Vanessa will grow up and be somebody,” Martha said
Meeting Lily Wells for the first time is an unforgettable experience.
In spite of her tiny stature and apparent frailty, she is warm, chatty and immediately engaging with visitors. If you disregarded the wispiness of her golden locks you would probably think she was a perfectly healthy two year old who appears mature beyond her years.
And yet the last two years have been nothing short of a rollercoaster for Lily and her family, from diagnosis at the age of ten months to a bone marrow transplant last November. Lily, the youngest of Kirsty and Steve Wells' three children, is battling with juvenile myelomonocytic leukaemia, so life for the Wells' family revolves around hospital stays, chemotherapy, frequent infections and the need for constant medical monitoring of Lily's condition. Time at home with her parents and siblings, brother Joey (4) and sister Amber (12), is precious and every effort is made to maximise the chance to be a "normal" family. Kirsty has learnt to deal with the complexities of Lily's daily medications routine and her gastrostomy, a gastric feeding tube that helps when patients are malnourished and cannot take enough food by mouth to maintain their weight. Amber and Joey have become used to frequently staying with extended family and friends when Lily is in hospital and Steve is constantly trying to juggle the demands of working to provide for his family with being with his children. Life is tough; Lily has been critically ill on several occasions but the Wells family is united in their fight to find a cure for Lily's leukaemia.
Last year Lily's doctors told Steve and Kirsty that a bone marrow transplant was Lily's best chance for a cure. Miraculously, a donor was found in the United States and the transplant was performed in November at Great Ormond Street Hospital. Kirsty and Steve were conscious that the demands of being in isolation with Lily for at least a month would be traumatic for Amber and Joey too, so they opted to share the responsibility of staying in hospital so that both parents could also spend some time at home with the older children. Having already used up his leave allocation (when Lily was previously in hospital) Steve had to take unpaid leave in order to care for his children during the transplant, causing financial stress at a time that was already emotionally and physically challenging in the extreme.
Christmas came early to the Wells' family when Lily was well enough to leave hospital on the 23rd December. Both Kirsty and Steve say that waking up on Christmas morning at home together with Lily, Amber and Joey was the best present ever. Weekly trips to London continue for tests and consultations but if all goes to plan Lily will be well enough to enjoy a week with her family at The Bluebells in May for a much deserved holiday.
Here's to 2011 being Lily's year!
It is official – spending time with Harry Bell can seriously affect your intellect!
Not many 11-year-olds can talk eloquently about the differing features of the top 20 volcanoes, let alone put together a detailed 42-slide PowerPoint presentation on any number of specialist subjects – but then Harry is no ordinary boy.
Harry is the third child of Carolyn and Rob Bell; their eldest son Daniel, aged 13, is severely autistic and their daughter Alice, aged 15, has Asperger’s syndrome – a condition which is also on the autism spectrum and which causes difficulty with social interaction, clumsiness and use of language. It means she has restricted interests and patterns of behaviour.
Harry also has Asperger’s. Consequently, all three children require a high level of order, routine and familiarity in their daily schedule, which has been seriously tested over the last five years following the devastating discovery that Harry also has leukaemia. Harry was diagnosed with acute lymphoblastic leukaemia (ALL), a cancer of the white blood cells, at the age of five. For three years he endured rounds of chemotherapy, frequent hospital stays and complications associated with this form of blood cancer. At the end of treatment in 2007, Harry was officially “in remission” and the Bell family eased back into the pattern of their old lives. 12 months on they even allowed themselves to relax enough to make a new addition to the family – an adorable, chocolate Labrador puppy named Truffle.
Then the unexpected happened – Harry’s leukaemia returned and once again family life became full of uncertainty, disruption and fragmentation.
Harry’s treatment following his relapse has been beset by one complication after another – each requiring lengthy hospital stays and long separations from his dad and siblings. In the last eight months he has fought two cases of shingles, mumps, and pneumonia – any one of which could have been fatal to a youngster who, because of treatment, has a significantly weaker immune system. The fact that those affected by Asperger’s often appear to have poor social skills presented a challenge for hospital staff treating Harry – particularly when they needed to ask how he was feeling or whether he required pain relief. Carolyn explains: “Most of the nurses just couldn’t ‘get’ Harry; they didn’t understand that he wasn’t being belligerent in not answering direct questions and they very probably misunderstood many of his responses, which can be quite frank. Fortunately, we were able to get some time with Karen Steinhardt (the psychologist at the John Radcliffe Hospital who supports children with cancer – a post initially sponsored by Sebastian’s Action Trust). This really helped as she was able to arrange for notes to be attached to Harry’s file explaining about Asperger’s, and giving staff examples of what does and doesn’t work with children like him. It made a tremendous difference to both Harry and to me.”
Despite the frustrations of long periods away from family and friends, Harry is uncomplaining about his experiences. He says: “It was ok really; I had my dad’s laptop most of the time so I could use Google Earth to research some of my favourite topics, and I like putting together slideshows about some of my interests – such as the solar system or meerkats.”
Harry has just turned 11 and was eagerly anticipating the treat of a trip to London to see the show “Wicked”; a previous trip had been cancelled because he was not well enough and he was devastated when, once again, doctors said his immune system was too low for him to go because of the risk of getting another infection. The Trust is now planning another surprise for Harry and his family to enjoy.
As treatment continues, Harry is thinking about returning to school (something he hasn’t been able to do in some time) and of September when he will start secondary school. Harry is an extremely bright individual; he is particularly good at maths and hopes to become a commercial pilot. In spite of all he has been through, Harry remains positive. He says: “I think I’m very lucky with my life; I have my family and some of the time I have my health, and that’s a lot to be thankful for".
It doesn’t get more humbling than that!
Identical twins Noah and Freddie Hart are very excited about their forthcoming third birthday, but for their parents, Gemma and Tony, every day spent away from hospital is cause for celebration.
From the beautiful photos seen here it is diffcult to imagine anything out of the ordinary about these boys; they have an insatiable appetite for life and are clearly comfortable at The Bluebells, which both regard as "their holiday house". But for the Hart family of Basingstoke, Hampshire, the past two-and- a-half years have been a relentless rollercoaster that has afforded little time for precious family life.
When Noah and Freddie were born in March 2009 they were seven weeks premature, so the month they spent in the Special Care Baby Unit was to be expected. Life in the Hart household was the frenetic but relatively normal cycle of feeds, changing and sleep associated with the arrival of twins, but a day out to the Sealife Centre when the twins were six-months-old gave the first indication of trouble ahead. Without warning Noah encountered breathing difficulties and was admitted to the High Dependency Unit at Basingstoke and North Hampshire Hospital. Within hours Freddie showed similar symptoms. Both boys were hospitalised for three months, with only a day at home to celebrate their first Christmas as a family.
The boys were initially diagnosed with bronchiolitis (inflammation of the smallest air passages of the lungs) caused by a respiratory virus. Throughout their time in hospital they were placed in headboxes (compression chambers) as they were unable to maintain adequate oxygen levels without support. When they were finally discharged in February 2010 the family nervously tried to pick up the threads of normal life. In September Noah experienced his first seizure, which immediately took them back into hospital. A second seizure three weeks later revealed this was not the one-off episode doctors predicted.
The onset of colder weather saw both twins back in hospital with respiratory difficulties, which culminated in Noah being taken to Southampton hospital to be ventilated whilst Freddie was treated in Basingstoke. The physical separation, and fear of what was happening, was traumatic for the twins, let alone their devoted parents. Both boys continued to encounter respiratory distress each time they left hospital making Basingstoke hospital, in particular, an all too familiar place.
Last December the twins again experienced a sudden deterioration; Freddie was admitted to the Paediatric Intensive Care Unit at Southampton hospital while Noah was in the High Dependency Unit at Basingstoke with pneumonia.
Tests have identified other possible causes for the respiratory problems Noah and Freddie continue to face but, in an attempt to obtain a conclusive diagnosis, the boys' DNA is being tested by a specialist in New Zealand. Scans have shown that Noah has periventricular nodular heterotopia - a disorder which can lead to epilepsy and developmental delay. A heart defect was also identified which will require surgery.
Life outside hospital for Freddie and Noah revolves around a continuous cycle of nebulizers (generally five each per day), coupled with antibiotics, vitamins and in Noah's case epilepsy medications to maximize time at home. Life for Gemma and Tony revolves around their boys. Gemma says: "The boys somehow keep me sane. I worry about them 24/7 but their love of life just keeps us all going, even if it is always on the edge of a precipice. We're incredibly lucky to have fantastic family support – our parents and siblings literally drop everything to be with us when we need them and we know it is so hard for the boys' grandparents to watch what is happening. They worry about all of us and that is just so difficult.
Last month we spent time at The Bluebells, all of us together and that was overwhelming; we felt touched and really privileged to be there. We're still talking about what a great time we had. We're telling others in difficult situations all about The Bluebells in the hope they can go there too for some special time together. The boys are looking forward to going back there and can't wait for the Easter Egg Hunt at "their house". When you put a smile on their faces it means everything to me - I've never known them so excited."