Sponsor a Family Support Worker for Sick Children

Niamh was a typically active little girl until she was 18 months old. She could crawl, stand up, was trying to walk, could eat solid foods and play like other children her age. Her parents, Claire and Peter, noticed that this changed one day when she suddenly couldn't do all of those things anymore. She stopped crawling and would choke on solid lumps of food.
 
After eight months of stressful and worrying tests, Niamh was eventually diagnosed with Metachromatic Leukodystrophy, a progressive genetic disorder resulting in the signals from her brain not being able to get through to her muscles via the central nervous system. 

A physiotherapist who had been working with Niamh contacted Rainbow Trust Children’s Charity, and Family Support Worker Linda came into the family's lives. 

“Linda phoned to say hello and to arrange a time to come round for her first visit. I could have held onto her all day, with the relief at being able to talk to someone freely about Niamh and what it was like dealing with the diagnosis we had waited so long for.” Claire, Niamh’s mum

Linda came to the house weekly and helped with Niamh’s care. Linda also spent time with Niamh on her own, giving Claire vital time with her older daughter, Isabel, who often missed out on important one-to-one time with mum because of Niamh’s condition.

“I felt like I was letting her down and wasn't there for her like a normal mum would be. That’s a huge benefit of having Linda's help and she has improved my relationship with both of my daughters.”

Niamh isn’t able to attend school due to the risk of picking up infections, but Linda brought along sensory equipment for Niamh to help stimulate and engage her, which she loved.

“After months of singing and seeing how much Niamh enjoyed it, Linda helped me arrange for Niamh to have special music therapy lessons. Another Family Support Worker, Sean, now sees Niamh fortnightly to give her a therapeutic music session. I couldn't believe it when Niamh started single along. I burst into tears and covered my little girl in kisses, I was so proud of her!” Claire, Niamh’s mum

Niamh is doing well generally though does struggle at this time of year because of the cold weather and Rainbow Trust will continue to support the family for as long they need.