Seven-year-old Maksymilian Butrym is a fighter. Born at 25 weeks weighing just 660 grams he was completely blind for the first two years of his life and needed oxygen for chronic lung disease until the age of four. He also has Cerebral Palsy and now faces another battle – learning to stand.
Maks has an NHS standing frame at school which allows him to stand up and stretch his muscles. However, it’s too big to be transported to his Ewloe home so he’s unable to do vital physiotherapy when not at school. Because of this, his parents, Aneta and Jacek, fear he’ll never progress to stand up on his own and fulfil his true potential.
Although the Betsi Cadwaladr University Health Board have met their statutory obligations by providing Maks with a standing frame for use at school, the policy prevents the authority from funding a standing frame for Maks to use at home – so he’s forced to miss out.
Newlife the Charity for Disabled Children is now urgently calling on the local community and businesses to help raise the £1,316 needed to give Maks a chance to stand on his own two feet.
Aneta said: “Maks loves his standing frame at school and is able to do so much more while he is there. At home he’s desperate to be upright, to play with his brothers – Marcel, aged four and Filip, three months – but all he can do by himself is crawl.
“Having a standing frame at home would help him so much. He would be standing in the correct, supported position to practise his muscle control. Without it he isn’t getting the therapy he needs to progress.
“Maks has already overcome so much. He was completely blind until the age of two due to a cortical vision impairment, but treatment means he now has vision similar to a baby’s. He no longer needs to use oxygen for his chronic lung disease either.
“At home he’s so limited in what he can do. He tries to pull himself up on things, to stand up by himself, to be independent. We need to watch him all the time to make sure he’s safe. A standing frame would mean he was safer at home too.”
Newlife’s Senior Manager for Care Services, Carrick Brown, said: “Children with complex disabilities often need several pieces of equipment to ensure they are able to fulfil their potential and be the best they can be.
“Not having a standing frame at home means Maks is forced to miss out on vital hours of therapy which really could improve the quality of his life.”
Anyone able to help Maks should urgently contact Newlife on 01543 431 444, visit the website at www.newlife.support/HelpMaksymilian or email [email protected]. You can also text NEWLIFE MAKS to 70500 to give £10 to Maks appeal. Newlife will receive 100% of your donation. Texts cost £10 plus 1 message at your standard network rate. Always get the bill payers permission.
Maks is just one of 24 children in Wales on our waiting list and in desperate need of specialist disability equipment costing a total of £53,539 so every penny we raise is so vital. Money raised above the amount needed for Maks to have a standing frame will be used to help other disabled and terminally ill children in need in Wales.
STOP PRESS: Thanks to a great community effort and lots of media support we have now raised enough money for Maks’ specialist standing frame.
However, you can still donate to help the other 25 children on our waiting list in Wales who need £56,761 of specialist equipment. If you are able to help please call 01543 431 444, Text WALES TO 70500 to donate £10 – Newlife will receive 100% of your donation. Texts cost £10 plus 1 message at your standard network rate. Always get the bill payers permission.