Ellie & Jack

Ellie is 13 years old and Jack is 18 years old. They are brother and sister and live with their family in Midlothian, Scotland. They both have Pontocerebellar hypoplasia type 2. As mum Lynne explains, “The condition affects the development of the brain. They both need 24 hour care for all their needs. They can’t walk or sit unaided, they require specialised seating and wheelchairs to get around.” Ellie and Jack are also tube fed through their stomach.

For Ellie and Jack, communication is difficult, as they are both unable to talk. “Ellie is very good at eye pointing. She is a really happy child and you know how she is feeling by the sounds she makes and the expressions on her face.”

“Jack is also really happy. You know what he wants through his vocalisations and facial expressions.”

Lynne tells us that two years ago, Jack’s health took a turn for the worse. “At the age of 16 he suffered a cardiac arrest whilst in hospital for a chest infection. It left him fighting for his life and unfortunately he suffered further brain damage as a result. Life is much more difficult for him now. He requires chest physio and has a nasopharyngeal airway to help keep his airway open.”

“The Take a Break grant has been fantastic. It’s made it possible for us to spend quality time together as a family.”

There is no way we can afford a full accessible break so receiving a grant from Take a Break helps make this possible, especially as I only work 10 hours a week. My husband had to go from working full-time to part-time when Jack had his cardiac arrest, so our income is very limited now.”

“Quite simply, the Take a Break grant helps us spend quality time together. We made precious memories and without it we would not be able to afford the type of accommodation we need.”