A nine-year-old girl whose brother suffers from a life-limiting rare brain condition is taking on a challenge to raise money for the hospice that helps care for him.
Ellie Nemeth, of Duffield, will undertake 20 good deeds as part of Rainbows Hospice for Children and Young People’s Do 20 for 20 campaign, to coincide with its 20th birthday celebrations this year. For each good deed she carries out, she will be rewarded with a sticker and a donation.
Ellie, a pupil at Duffield Meadows Primary School, wants to raise funds for the hospice, which has supported her five-year-old brother, Tom, and the rest of the family, for the past two years.
Shortly after birth, Tom was diagnosed with neuronal migration disorder, a rare brain condition and as a result Tom suffers, from severe cerebral palsy, epilepsy and visual impairment. He also has pituitary dysfunction that means he can frequently dip into low sugar comas and has to be rushed to hospital. Tom is unable to sit, walk and has limited speech, but he can manage to say the most important words to his family such as “I love you”, “hello” and “thanks”.
Mum, Sam, said: “We don’t really know how long we will have Tom for, which means we make the most of every day we have him and are always trying to make lots of life memories. Tom will be dependent on us for all of his life but he is the happiest, smiliest little boy. He enjoys school, watching the grand prix races and he loves football, especially Derby County.
“Looking back to when Tom was first born and struggling in hospital, Ellie was four and I saw her for two hours every other day for four months.
“She coped with that much better than I did, she is just an amazing, amazing little girl and now we have the happiest little family. She is always trying to raise awareness of Rainbows and I am very proud of her.”
Ellie has benefited from the Sibling Support services offered by Rainbows. She has visited the pandas in Edinburgh Zoo, been on day trips, met comedian David Walliams and presented flowers to Princess Alexandra. Now she is looking forward to taking on 20 good deeds in return for donations from her family. Ellie said: “I love Rainbows and it is great that I can do something to raise money for them as they look after my brother.”
Paula North, Rainbows community fundraiser in Derbyshire, added: “It is wonderful to see Ellie embracing this challenge. People can donate whatever they think the deed is worth and every time a good deed is carried out, a sticker is earned for children to complete a challenge sticker sheet.”