Lighting up Ismail's future

The family of a five-year-old boy from Luton, who has a very rare liver disease, are raising money so his dream of having a sleepover can come true.

Wednesday, 23rd May 2018, 7:00 am
Updated Friday, 8th June 2018, 8:42 am
Ismail with the family from the Netherlands

Ismail Ali suffers from Crigler-Najjar syndrome, which means he has to be at home in his medical treatment lights for 12-14 hours a day. His family are raising money for portable lights so he will be able to have a sleepover and go on his first ever holiday.

He previously needed 22 hours of phototherapy a day and now with better equipment, built by a family in the Netherlands whose daughter has the same condition, he is finally down to needing 12-14 hours of treatment a day.

His sister Haleema, 24, said: “Last June he needed 22 hours of phototherapy a day which meant he was very restricted with what he could do.

“But now, thanks to better equipment built he is able to be away from the treatment for 10-12 hours a day, meaning he can do a lot more, he now goes to Downside Primary School full time and he really enjoys it, he even went on his first ever trip to London museum, where he was in awe of the dinosaurs.

“The family from the Netherlands were amazing and so kind, they just wanted to help us as they understand what it is like for Ismail.

“When they came to check on the maintenance of the equipment their daughter came with them and they said she has transportable lights that you just build round a bed.

“This is what we are raising money for, it will give him so many options it means his treatment no longer needs to be limited to home.

“Aside from going abroad, he can finally have holiday breaks within the UK, as currently that is not possible due to Ismail being restricted to only 10-12 hours off his treatment.

“He’s also always wished to have a sleepover, which is such a simple little dream, but one we couldn’t grant until now!

“These travel lights are made by the same family in the Netherlands who built a version for their daughter and now wish to help our family too.”

The transportable lights cost £13,500, and it packs away into a suitcase and builds like a tent, so that it can fit over any single size bed for Ismail to have his phototherapy treatment away from his home.

The family have set up a fundraising page and are organising a community fundraiser Iftar event on Wednesday, May 30, at Anando Mahal in Leagrave, from 7.30pm till 10.30pm.

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