WellChild - Helping sick children and their families across the UK

Family Stories

Children, young people and families are at the heart of WellChild's work. As part of this, we're committed to giving everyone an opportunity to share their experiences. We're looking for families and individuals who would like to share their story of caring for a child with a medical condition or disability. If you'd like to talk about your story, please contact Helen Eke, Family Networks Co-ordinator on 0845 458 8170 or email familynetworks@wellchild.org.uk

Haider's story

Haider in his garden Haider is a little boy with a whole host of serious health problems – but he also has a loving family and the care and support of a WellChild Nurse to help him through the tough times.

Haider, from Oxford, is now ten years old but, from the moment he was born six weeks premature his mum Asma knew something was seriously wrong with her baby boy.

Just ten days after he was born, Asma was told that Haider has a rare and devastating condition called Raine Syndrome and that he would probably only survive for a few months. Symptoms of the condition include increased bone density, breathing problems and facial abnormalities – doctors believe Haider also has other as yet undiagnosed conditions on top of that.

As a baby he had to undergo a series of operations including one for a corneal ulcer which left him blind in one eye and others to help him breathe and relieve the pressure in his skull and on his spine.

Because of all his medical problems Haider’s development has been quite delayed – he was late learning to talk and can only walk with the aid of a frame as he cannot straighten his legs, most of the time he is confined to a wheelchair. But despite all of this he is a happy, sociable little boy who attends a special school, has a great relationship with his brother and sister and loves playing with his toy cars and his computer.

Things became tougher for Haider and his family in early 2009 when he was in a lot of pain and had to have more surgery to release the pressure on his brain and spine – his mum was told that the situation was so bad he might be completely paralysed or even never wake up from the surgery - thankfully he came through it and survived

WellChild Nurse Jane Alvey has been a rock for Haider and his family to lean on. The family first met Jane last year, but after Haider’s latest setback in April she became even more involved in helping and supporting them. She coordinated Haider’s discharge home from hospital after his surgery and Asma said Jane really helped when she was so frightened about the possibility of Haider facing paralysis. Jane has taught Asma how to use some of the equipment Haider needs so she can help him at home rather than have to go back into hospital.

Haider proved the doctors wrong and has recovered well, and Jane continues to visit the family at home every couple of weeks to see how they are getting on.

Asma says: “Jane is really lovely and friendly and Haider really loves her – he calls Jane his sweetheart’.

She is convinced Haider has benefitted from being at home rather than on a hospital ward.

“It’s much better for him to be at home - he has been through a lot and he likes to be at home,” she said. “He doesn’t like to go to hospital even as an out-patient as he is so scared of hospitals because of all that he has been through in the past.”

But at home Haider is thriving and with Jane there to support the family he is doing well.

“He is more sociable at home – he goes to school quite regularly now and it is really helpful for him to have as normal a life as possible,” said Asma. “He used to be worried and insecure about what he could do and say ‘I can’t do that’ – now he believes he can do things.”

Jane continues to support the family organising what Haider needs and Asma is full of praise for what she has done for the family.

“Jane is nice – I really like her – she is so helpful and whenever we need her she does her best to provide.”