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.

Angelo was diagnosed with leukaemia when he was five years old. Eve and Theo, his mum and dad, were devastated when they received the diagnosis. Until then, Angelo had been a happy and lively child and had been looking forward to starting school.

He was referred to Rainbow Trust Children's Charity by a friend and soon after, Zak, one of our Family Support Workers, started supporting the family.

Zak took Eve and Angelo to hospital for treatments and appointments and often gave Eve a break by sitting with Angelo when he was in hospital for a long time. Having this kind of support meant that Eve could take a break, grab a cup of coffee or just get some fresh air. This respite makes a huge difference to parents who often spend hours and hours in hospital which can be very lonely and exhausting.

Zak also spent time talking to Eve about any concerns and issues she may have had. Having someone to talk to helps parents express their anxieties. Many families feel they cannot or don’t want to speak to or burden other family members who are already upset so, having an external person to talk to, gives them that objective and safe outlet.

“Zak’s support was what we needed as a family, it was just perfect. When Zak couldn’t come, one of the other team members was there to help which was a huge help to me. I don’t drive so having Rainbow Trust’s support made such a difference to us,” said Eve.

Zak also spent time talking to and with Angelo’s siblings who were struggling with his diagnosis. Athena, his younger sister had issues around thoughts of death and Zak helped her work through these and understand what was happening to her brother.

It is two years since Angelo was given the all clear. Eve and Theo were overjoyed when he completed his treatment and, “Angelo is doing really well, still as stubborn as usual, but good,” says Eve. For the past four years, Eve has taken part in Rainbow Trust’s Big Hour campaign by having a cake sale and has raised a massive £2,892. A huge thank you to Eve and her family.