The McCarthy’s Story
"I don’t normally have someone to play with unless I have friends over, which can be hard at times. I love it when Tracy comes over – she is so much fun, she is awesome! She’s so active and we have a lot of fun!" – Orla McCarthy
When a child is diagnosed with a life-limiting condition, it impacts the whole family, including siblings. This was the case for the Angela and Patrick McCarthy, whose daughter Martha, aged 10, has a rare Chromosome Abnormality called Microdeletion 16P13.11. This causes developmental delay, microcephaly, epilepsy, short stature, facial dysmorphism and behavioural problems. All of Martha’s care takes a lot of Angela’s time, which not only impacts on normal family life, but also has a huge impact on Martha’s younger sister Orla, aged seven.
Parents of children with complex needs do a lot of juggling and ever-increasing feelings of guilt over not spending as much time with any siblings. Trying to give Orla time, attention and a ‘normal’ life is an added strain on Angela when she is caring for Martha.
When the family were put in touch with Sebastian’s Action Trust, the Sibling Support service was a ray of light for Angela. “Orla often asks me ‘when is someone going to play with me?’, and I don’t often have an answer and feel so guilty that I can’t spend as much time with her.” says Angela. “Having the Sibling Support service helps me feel less guilty. There is someone that can come and spend quality time with Orla and make her feel special. It is time dedicated just to Orla, which is wonderful.”
The overall impact of Sebastian’s Action Trust has had such a huge effect on the McCarthys. “It is like having an extended family, there is always someone you can call on.” says Angela. “There is such a great network of families with knowledge of forms and the systems. The events that the Trust put on are also fantastic. The Bluebells is home from home. I can dry my hair and not be judged!”
Family events in a safe environment give the McCarthys the space to spend time together as any other family would, to spend with both their daughters and for Orla to feel included. Angela goes on to say: “There are many different activities that as a family we wouldn’t have otherwise done, but we can now because The Bluebells is a familiar place.”
For Orla, the annual Easter Egg Hunt is “the most fun because you get to hunt Easter eggs!” As for The Bluebells, Orla says “The crazy golf is the best thing about The Bluebells.”
The Trust has been able to offer the McCarthys a range of services but the Sibling Support has proved to be the most critical. It has given Orla some normality, someone to play with and reduced Angela’s feelings of guilt.
Orla finished off by saying “For me, the people are what makes it the most fun!”