Running for Rainbow Trust in the Great Manchester Run can really make a difference to the lives of local families with sick children. The money you raise could help a local family like the Scanlon's.
Niamh Scanlon
Five year old Niamh Scanlon from Manchester 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 opinions and tests, Niamh's mobility continued to deteriorate. 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. Niamh is unlikely to live long past her fifth birthday.
A physiotherapist who had been working with Niamh contacted Rainbow Trust and Family Support Worker Linda came into the Scanlon 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, 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. The first thing Linda did was make me a cup of tea and then she set up the ironing board and got to work on the huge pile of ironing I had fallen behind on while we talked about everything. I felt like I had achieved something by the end of those few hours, even though Linda had been doing all the work!'
Linda visits Niamh and her mother Claire every week to provide both emotional support for Claire and practical support around the house and with Niamh.
'It's very hard being at home all day with someone who can't speak, can't reassure you that she is ok and not in pain. It can be very lonely and very scary. Having Linda there to listen to me and respond to my questions and my fears made me see that I wasn't going mad. She is an absolute one in a million and happy to help with absolutely anything.'
'I now have a chance to take some time out for myself. It keeps me going, knowing that I can recharge my batteries with a bath, a chat with a friend on the phone or doing the weekly shopping. Niamh really enjoys that time with Linda as well so we both have a great few hours enjoying our own special time.'
Family Support Worker Linda takes along the sensory suitcase on her visits to see Niamh and Claire which was a hit from day one!
'It can be very hard trying to find things to stimulate a child who can't respond to anything. The sensory suitcase is fabulous and I really think that the toys in it are what keep Niamh's brain active. Niamh loves eye contact and closeness so Linda is able to focus all of her attention on Niamh, the attention she deserves, while they play with the toys.'
Linda and Niamh love to sing together as well - Niamh might not be able to sing along but her eyes light up with delight. 'Three Little Piggies went to market' is Niamh's favourite as she waits for the tickles at the end! Her beautiful eyes tell us everything and her delight when she sang with Linda meant they did it more and more. After months of singing and seeing how much Niamh enjoyed it, Linda helped me arrange for Niamh to have 1:1 music therapy lessons, even though we didn't think our local hospice would do it. Linda persevered and we got the lessons - I couldn't believe it when Niamh sang during the fifth session! Her carer and I burst into tears and covered my little girl in kisses, I was so proud of her!'
Claire wasn't able to spend as much time with her elder daughter Isabel due to the constant care she needed to provide Niamh. 'I felt like I was letting her down and wasn't there for her like a normal mum would be. Linda changes that. Sometimes we will arrange for Linda to come when Isabel is home from school so that the two of us can spend some time together without Niamh. That is a huge benefit of having Linda's help - I can spend time with both my daughters without worrying I'm not with the other one. Linda has changed my relationship with both of my daughters.'
Niamh's condition continues to worsen as the family celebrates her fifth birthday. 'Linda helps us to make the most of our time with Niamh and making what time we do have left with her special.' Nothing is too much for her and she supports us all in the way that we need it. When Niamh does leave us I know that Linda will be there for us and I'm so grateful to know that.'
Last year our team of Great Manchester runners raised enough money to provide a local Family Support Worker for nearly two years! Please help us help even more families this year, your support will make a difference.
Click here to Sign up to our team of runners or to read more about the Great Manchester Run 10k.
