Bringing up a child on your own is no easy feat, but when you have a child with a terminal illness life can be a real struggle and very lonely.

That’s exactly the situation that Neil, a single dad, supported by Home-Start, has found himself in since his daughter was diagnosed with a condition that means it’s unlikely that she will reach school age.

It was in fact Home-Start that helped to discover what was wrong with Isabel. Neil’s Home-Start volunteer, was so concerned that she continually raised the issue of Isabel’s developmental delays. By bringing in other services, Isabel’s condition was eventually diagnosed. In the space of one day, Neil had to deal with the fact that Isabel, who he thought was just a healthy baby was in fact terminally ill.

Parenting his three year-old daughter Isabel, with virtually no support is a massive challenge for Neil. Isabel has a life-threatening condition called Metachromatic Leukodystrophy. It affects memory, speech, muscles, eye sight and mobility. It is a rare condition that little is known about, which makes the prospect of caring for such an ill child extremely daunting for Neil. Looking after Isabel requires round the clock care from Neil, from administrating her medication to feeding her through a tube. She needs constant attention as there is a fear of her choking.

Isabel’s mum, Karen, no longer lives with them, she is suffering from a mental illness and Neil made the difficult decision that his daughter had to take priority in his life and needed his full attention. Neil is left feeling very isolated as he is often on his own with a terminally ill child.

Neil said that he had some brief respite when Isabel was offered a place in nursery. Unfortunately this did not last as the nursery felt that they could not meet the support requirements for Isabel’s condition.

With the help of Chris, his Home-Start volunteer, Neil has another adult to talk to, to raise concerns with and listen to how he is feeling-which changes day by day.

 He says that Home-Start has proved to be his ‘lifeline’. His volunteer offers him both practical and emotional support, and Neil says, ‘someone to turn to’. Home-Start have helped Neil fill in difficult application forms, arrange transport for hospital appointments, take Isabel to Home-Start parties so that she doesn’t miss out on meeting other children, and support him with his feelings around Isabel’s illness.

With Home-Start’s help, Neil says that he can stay focused on Isabel and her needs, and try and remain positive in such a difficult and sad situation.

... One year on....

We caught up with Neil as he took Isabel to a hydrotherapy session, something that Isabel really enjoys.

In the last year, Isabel has continued with many trips to the hospital, and Neil had to take the decision that respite care was no longer an option for her. The last time Isabel was in a respite home, she contracted a virus and ended up in intensive care.

So Chris, Neil’s Home-Start volunteer continues to visit the family, offering practical support for Isabel and friendship and emotional support for Neil.

Neil told us that last Christmas, Home-Start Bridlington held a Christmas party, and Chris took them along. Isabel had a lovely time and it was a chance for Neil to be amongst other families and share in the Christmas spirit.

Isabel has been making some progress, her mobility has improved and Neil has put this down to the honey he has been putting in her feed!

What is sad, is that Karen, Isabel’s mum, is finding it harder and harder to see Isabel. She is struggling to cope with Isabel’s condition as well as her own mental illness. She has turned to alcohol and had not seen Isabel very several weeks when we spoke to Neil.

But despite this, Neil continues to stay positive, determined to provide a happy and loving home life for his little girl, who was five in May.

Please support Home-Start so that we can continue to support more families like Neil's. Find out how you can help us here.

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