Hospital Transport for Terminally Ill Children

Two-year-old Hadi was diagnosed with SMA Type One when he was eight weeks old. The disease affects all the muscles in his body because he is missing a protein called SMN. He is tube fed, unable to swallow or to sit up unaided and can have difficulty breathing.

But his mum Sanaa says his symptoms have improved since taking his medication, Spinraza, which replaces the missing protein and which is administered through an injection every four months. Recently he has stood up for the first time, in his specially-adapted frame – a huge breakthrough for the little warrior.

When Hadi was diagnosed, Sanaa knew immediately that she would need additional support because her husband travels a lot for work. Rainbow Trust’s Family Support Worker Vilja has helped the whole family in coping and coming to terms with Hadi’s illness, as well as supporting the more practical aspects of their life. Sanaa doesn’t drive, so Vilja drives them to hospital appointments. She also takes Hadi’s older brother to school and drops Sanaa at work when needed, so that the family can try to continue as normal as much as possible.

Sanaa says, “I feel so reassured and so much better after speaking with Vilja, she is so supportive, as good as my counsellor. Vilja helps us with every single aspect of our lives. She knows how to calm me down and she goes out of her way to help and I have been really touched with how caring she is. Without Rainbow Trust I would be feeling down. Thankfully whenever I need help I can make that call and Vilja will go out of her way to help.”

Sanaa doesn’t know what the future holds for Hadi but understands the importance of raising awareness of SMA and Rainbow Trust. “Whenever I come across a struggling family I always mention Rainbow Trust because they do all they can to support families. Vilja and Rainbow Trust are amazing in every way.”

Rainbow Trust currently supports over 2,300 families like Sanaa’s, all because of the support we receive from kind donors. Every donation enables our Family Support Workers to make life easier for seriously ill children and their families.