Chesterfield family aiming to raise £18,000 for special chair for son Rudi, 3, who has rare incurable spinal condition, so he can go to school
A loving Chesterfield family is hoping to raise £18,000 for a special chair so their three-year-old son who has an incurable genetic spinal condition can go to school next year.
Rudi Else has spinal muscular atrophy (SMA) - a life-limiting condition which causes the muscles to become weak and causes problems with movement.
Doctors said that Rudi would not live past the age of two - but the brave little boy is fighting against the odds and is determined to go to school in September 2020.
MORE NEWS: Derbyshire Police warning over HMRC scammers
A new power chair would allow Rudi to move around on his own much easier, rather than rely on his parents Daniella and John to push him in his wheelchair pram.
Daniella, 41, of Stonegravels, said: “Everybody that meets Rudi do not forget him. He is a bubbly person and strong minded. He knows what he wants and is determined. He has been through so much - he is always in and out of hospital a lot - but he is always happy.
"We have started saving and would really appreciate any fundraising efforts for help towards a power chair. Our dream of seeing Rudi driving along besides us would make our world. Life will always be more of a struggle for Rudi this could help so much."
Rudi was diagnosed with SMA when he was six-months-old when his mum Dani noticed that he could not sit up unaided.
"When we received the horrific diagnosis we were told by doctors to enjoy the time we had together and that he would most likely deteriorate and pass away before his second birthday due to respiratory failure," Daniella said.
"As the condition is degenerative we never knew how long we had with Rudi so making his life as full and happy as was possible was what we decided to concentrate on."
Just over two years ago, Daniella and John took Rudi to Paris for some treatment which is not available on the NHS.
Although it is not a cure, the treatment has stabilised him and proved a success so far.
The drug is administered into his spine and needs to be given every four months for life.
Daniella explained: "After a national campaign to bring this treatment to the UK, Rudi has continued to have his injections done at the Sheffield Children’s Hospital. The decision as to whether as a country this will be funded by the NHS for future sufferers of the condition is still under debate due to its high cost, even though there are many other countries who have approved the drug as the primary treatment for SMA."
In September 2020, Rudi, who has a nine-year-old brother called Max and three-month-old sister Charlie, will go to school.
He currently relies on his parents to get around but they hope to raise enough money to buy a power chair which will allow him to move around on his own.
“He gets quite frustrated that he cannot walk himself around,” Daniella said. “So the power chair would allow him to go where ever he wants and have that little bit of independence he has never had.
"He has always been an absolute delight. His personality and smile could light up a room. SMA does not effect cognitive skills so Rudi will attend a mainstream school so he can fulfil his potential.
"His love of life and sheer determination makes us a family so proud. We want Rudi be able to interact and have fun with his friends at school, his family and most importantly his big brother max and baby sister Charlie."
If you have a fundraising idea, email [email protected]