Alyaan, from Rochdale, is seven years old and has spent most of his childhood in and out of hospital, for long-term stays. The Sunshine Appeal will hugely benefit patients like Alyaan and their families.
“Alyaan was four years old when we first realised he was unwell", says mum Sumaira. He started having lots of chest infections, and then seizures, and sometimes he would stop breathing, so we ended up in ICU. We spent six months on the Children's Unit at Royal Oldham Hospital, then 11 months at Manchester Children’s Hospital and then we were transferred here to Royal Oldham again.
"Since he’s been here, he has had fewer infections as they fitted a gastrostomy tube for his feeding, but he still gets throat infections, thrush and high temperatures, and he still sometimes stops breathing, so that’s why we’ve been here so long.
“We’ve been living here on the Children’s Unit for six months, so our whole life has changed. Alyaan has two older siblings and my husband takes care of them, and they come to visit us in the evenings. It’s not easy at all. But the care here is really good, they know Alyaan really well and they look after him well. I feel safe knowing the staff are right here if anything goes wrong, which is important, because his symptoms can change within minutes and it’s really scary.”
Alyaan has thalassaemia, which causes the body to have less hemoglobin than normal. Hemoglobin enables red blood cells to carry oxygen, so when his hemoglobin levels drop, he becomes symptomatic and requires increased oxygen. He also requires ventilation of high-flow oxygen overnight, when his symptoms worsen. He has his gastrostomy tube fitted too, to provide him with nutrition, as he’s unable to eat. He also had a fluid blockage in his brain, which has stopped him from developing skills like sitting up unaided and talking, and he had an operation to try and remedy that. For a little while, his symptoms eased, but then they started again.
Although clinicians understand some elements of Alyaan’s condition, Sumaira calls him “a mystery”, as there’s still much that they don’t know. The family have seen many specialists to try and find the reason for his symptoms, but they’re not able to pinpoint a root cause.
“We have a lot of family support and we’re trying our best, but it’s been difficult, as he has got progressively worse over the years. We had to push hard at the beginning because we knew something was wrong, we know him, and so we were desperate to find out what was wrong. He’s had a lot of hospital care to try and help him, but after his brain operation, they told us they may not have much time left. It was heartbreaking.
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Alyaan is a wonderful child, we just treat him as ‘normal’ as much as we can. His older siblings adore him which is so lovely. He loves to play, he’s a happy child, he loves to watch TV and films, and as he’s growing up his preference for what he likes to watch is changing!
"People might look at him and assume that he doesn’t understand, or that he doesn’t know what’s going on, but he does! He’s really intelligent. I love to watch him smile and laugh.
“Alyaan loves sensory input, lights and sounds, vibrations, tactile things. When it was snowing recently, we took him outside and he loved the feeling of the cold on his face. He shows his preference for different colours, he loves pink light the most! He likes looking at himself in the mirror too.
“It would help a lot if the Unit had more facilities, especially for families like us who are here long-term. The staff are amazing but they deserve more, and so do the children. It’s nice that we have the Parent’s Room but it’s quite basic, and it would be nice to be able to use that space and do activities as a family, especially because his siblings and dad come and visit and we’d like to spend time together.
“Improving some of the spaces here would be great. If I’m honest, sometimes I feel like I’m in prison – because I’m so worried about Alyaan when he gets really unwell, and the environment of the ward doesn’t have the facilities we need, it can get really lonely. The staff are amazing and I’m really grateful for the care we get here, but if they had funds to make things better, it would make things much easier. Nobody is happy staying in hospital when their child is so unwell, but we’re doing our best.”
The plan is to try and discharge Alyaan soon, so he can receive care at home.
“I am excited about that but I’m also nervous, because Alyaan’s condition changes so quickly. I want to make sure I’m ready to care for him properly. I’d love for us to be home for Eid because we could spend it together as family and finally have some normality.”