Ismail's lifesaving travel lights

My little 5 year old brother, Ismail, has a very rare liver condition called Crigler-Najjar Sydrome, which causes him to be at home in his medical treatment lights for the majority of the day.

Do you remember your first ever holiday? That excitement and eagerness to see something new. Now imagine never being able to travel. Or being bed-bound for most of the day.

He previously needed 22 hours of phototherapy a day and now with better equipment (built by a lovely family in the Netherlands, who are pictured above with Ismail!) he is finally down to needing 12-14 hours treatment, meaning he can finally go to full-time school and had his first ever "trip" last summer to the London museums, where he was in awe of the dinosaurs! He's a little boy who wants to run around and be a superhero and see the world.

His dreams might come true, as there is now new portable equipment which means his treatment no longer needs to be limited at 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. It will cost € 15000, so we have set the fundraiser to £13500  based on exchange rates.  ‌‌ You can see the travel equipment information here.  ‌‌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 on abroad! 



Please show your support by donating or spreading the word so that a young boy can finally see what the world has to offer. Any help is appreciated!   If you’d like more information, my family were raising awareness on BBC, so you can have a look at the following links –  

1.      This filming was done prior to a stronger set of lights  ‌

2.     Update on his story March 2018, after having stronger equipment which reduced his levels and gave him a better quality of life  ‌

Thank you for your support.  

Haleema Ali (Ismail's big sister)