Zainab’s two-year-old son, Adnan, was diagnosed with rare life-limiting condition, Mucolipidosis type 2, at just a few weeks old. His condition leaves him developmentally delayed and unable to walk, and he has bone abnormalities, hearing problems and difficulty swallowing. Adnan and his family are cared for at Shooting Star Chase’s Hampton-based hospice, Shooting Star House – and this year the family are looking forward to a Christmas to remember thanks to the children’s hospice charity.
“We found out about Shooting Star Chase shortly after Adnan’s diagnosis and we didn’t think a hospice was for us,” says Zainab. “But we got to know a family who had benefitted from their support who said what a fantastic place it was, and I kept receiving invites for events at the hospice so I decided to go along to a mums’ pamper day.
“Adnan went to the day care room while I had my nails done, a facial and a massage, which of course was lovely. But the best thing was being able to meet other mums going through similar things. One of the hardest parts of our journey is feeling like we’re on our own, and suddenly, after visiting the hospice, I knew we weren’t. I came home and told my husband we had to go back!”
“The life expectancy for Adnan is anything between three and seven years old, so we cherish every moment with him”
Two years on, Zainab and her family have regular short breaks at Shooting Star House and Adnan goes to day care.
“The hospice is like a second home to us and the staff are always amazing. Adnan gets one-to-one care which I know he wouldn’t be able to get anywhere else, and they love him like he’s their own. They take down every detail about Adnan’s routine and there’s someone looking after him constantly. The facilities, such as the sensory room and the hydrotherapy pool, are really good as well.
“But it’s not just Shooting Star Chase’s care that makes a massive difference. The life expectancy for Adnan is anything between three and seven years old, so we cherish every moment with him – and the hospice do everything they can to create special memories for us as a family, particularly at Christmas.
“I remember getting upset watching a children’s nativity on TV last year because it dawned on me that I’d never see Adnan perform in anything like that. But the very next day I unexpectedly got a DVD in the post from Shooting Star Chase and it was a nativity play they had filmed, and Adnan was in it! He was dressed as a shining star and I was so overwhelmed – I was able to see him in a nativity that I thought I’d never get to see. It made my Christmas.
“We’ve also been to Christmas parties at the hospice that are catered specifically for children like Adnan, and it was so nice to see him taking part in all the festive activities that are usually so difficult for him. I had got to the point where I couldn’t take him to other children’s parties because they were all running around, and Adnan was just on the floor and couldn’t get involved – but at the hospice we don’t feel different.
“This year we’re really looking forward to going outdoor ice skating with Shooting Star Chase, which would be really difficult for us normally, but they make arrangements so he can go on the ice in the buggy. We also want to go the family carol concert the hospice puts on, which I know Adnan will be able to participate in. Experiencing these special festive moments people can take for granted becomes much harder when your child has a serious illness but Shooting Star Chase give our family – and many others – a Christmas to remember.”
Visit: shootingstarchase.org.uk/christmastoremember to hear more of Zainab’s story.