“Christmas is a special time for us. Adnan’s condition is life-limiting and the average life expectancy is anything between 3 and 7 years old, so we cherish every moment with him – and the hospice do everything they can to create special festive memories for us as a family.”
“The night Adnan was born was probably the worst night of my life,” says mum Zainab. “You know giving birth is going to be horrible, but you think there’ll be a reward at the end. And there I was on a ward of new mums with their babies and I was on my own.”
Adnan had been taken to NICU shortly after being born and five weeks later Zainab and dad Ali attended Great Ormond Street to discuss concerns about Adnan’s development.
“We’d had lots of things mentioned from the moment Adnan was born, from rickets to a metabolic disorder. Mucolipidosis type 2 had been dropped into conversation and we knew that could be serious, but we arrived at Great Ormond Street hoping things would be OK because it was so rare. When we walked into the room there were three people sitting there, and immediately I knew they were there to deliver bad news. They told us blood tests had confirmed Adnan had Mucolipidosis type 2.”
The condition causes severe developmental delay and life expectancy is usually no more than seven years.
“It was a really quick appointment. We had loads of questions but didn’t say a single thing. We just wanted to get out of the room. Ali and I drove in silence for a bit, then Ali said we should stop to talk. We just broke down in tears. The realisation that our child had such a short life expectancy just hit us. How can you imagine that your child will have a really short life? You know this sort of thing happens, you just don’t think it will happen to you.”
Not only did Ali and Zainab have to come to terms with the devastating diagnosis, but they felt added pressure telling friends and family.
“Those months were horrible. People didn’t know what to say – what can they say? It’s particularly hard for our parents. They see their children and grandchildren going through the most awful situation and feel helpless. My dad says his heart is breaking for us. He adores Adnan, he would do absolutely anything for him and it’s clear he’s been badly affected by it.
“Two years on, Adnan doesn’t sit up or have much head control. He is small for his age and probably won’t grow much more. The condition varies but very few children with Mucolipidosis type 2 are ever able to walk. He has hearing problems and difficulty in swallowing so he’s a high choke risk. The most common reason for a child with Mucolipidosis type 2 dying is they get a common illness and they can’t fight it because they’re not strong enough. I worry constantly that when he gets the flu, might it develop into a chest infection, and then pneumonia, and could this be it for him? It’s mentally draining. You can be tempted to keep him locked away to not expose him to any bugs – and some families do – but we feel we can’t do that. We want Adnan to have a quality of life where he can enjoy things.
“We still get those special moments as parents. He loves my phone and when he learnt how to swipe it felt like a big achievement. Adnan’s not healthy but he’s the best thing in our lives. His smile is my everything. It’s the best smile in the world. And he has taught us so much.”
The family were told about Shooting Star Children’s Hospices soon after Adnan’s diagnosis, but they were initially reluctant to attend.
“At first we didn’t think a hospice was for us,” says Zainab. “And on a practical level, it felt like I had a million medical appointments and I thought it might be one thing too many. 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!”
Now, Adnan attends day care at Shooting Star House once a week, and the family also benefit from short breaks. “When Adnan stays overnight we usually stay too because we get a break but can spend quality time with Adnan doing things he likes. 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. But it’s not just the care that makes a massive difference, it’s the little things they do too.
“They take down every detail about Adnan’s routine and there’s someone looking after him constantly. You know he is getting the most of what he can. And they love Adnan. They’re forever telling us to go out because they want to play with him! And we have that confidence to go out because we know how well they look after him.”
Zainab says Shooting Star Children’s Hospices is one of the few places where they feel comfortable. “When we go out we get so many stares and questions. I’ve almost distanced myself from normal children’s parties because it is impossible for Adnan to get involved and it can be stressful and upsetting. The hospice is the only place where we don’t feel different. The facilities are great, such as the sensory room and the hydrotherapy pool, but it’s the little things that make a huge difference.
“Christmas is a special time for us. Adnan’s condition is life-limiting and the average life expectancy is anything between 3 and 7 years old, so we cherish every moment with him – and the hospice do everything they can to create special festive memories for us as a family. Last Christmas I was watching a children’s nativity on TV and it dawned on me that I’d never see Adnan perform in anything like that. I just broke down, I was so upset. Then the very next day I unexpectedly got a DVD in the post from Shooting Star Children’s Hospices and it was a nativity play they had filmed, and Adnan was in it! He played a shining star and I was so overwhelmed that they thought to do that – it made my Christmas.
“Shooting Star Children’s Hospices invite us to their Christmas events and we plan to go outdoor ice skating, which would be really difficult normally because Adnan doesn’t walk, but they make arrangements so he can go on the ice in the buggy. We’ll also go to the Christmas party because I know Adnan will be able to participate. I can’t take him to other children’s parties because they are all running around, and Adnan is just on the floor and can’t get involved. But at the hospice they cater everything towards the children they’re caring for and think about all the things that will make it a special Christmas for them.
“Shooting Star Children’s Hospices is amazing because they give my family a Christmas to remember. They help us make the most of the time we have with Adnan and they give us the opportunity to do things we usually wouldn’t be able to do.”
Read more family stories here.
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