New ‘lifeline’ wheelchair will give Sebastian independence
The electric wheelchair that Sebastian Mawbey has used since the age of three is described earnestly by his family as his lifeline.
Not only is he dependent on it for mobility in day-to-day life, it provides him with an element of independence that affords him the same opportunities as his peers, the simple pleasures – playing with his friends and enjoying the great outdoors with his parents and older brother.
But, after six years of use, Sebastian has outgrown the chair and a fundraising campaign has been launched to support his family to purchase a replacement.
“Sebastian enjoys doing anything that everyone else is doing,” explains mum Victoria. “He always wants to be out with his friends or his brother Noah. He likes playing with Lego and Playmobil and going on the Xbox, but he really likes going outside. We are quite outdoorsy people and we like to go on walks. Without that chair, Sebastian wouldn’t be able to do those things.”
When nine-year-old Sebastian was born, he spent several weeks in hospital in Canada, where his family were living at the time due to dad Steven’s service with the British armed forces.
He had a blockage in his bowel, was unable to swallow and was fed through a tube, and his feet were turned inwards and his knees bent upwards.
In his early months of life, Sebastian also suffered from bronchitis, three bouts of pneumonia and a collapsed lung. Doctors eventually told hisfamilyhehadarthrogryposis, the name used to describe more than 300 conditions which typically cause stiff joints and muscle weakness.
When the family returned to the UK in 2012 to live in Windsor, 16-month-old Sebastian’s care was taken over by Great Ormond Street children’s hospital in London.
“The team there further identified that the cause of Sebastian’s arthrogryposis was a fault in his DNA,” Victoria explains.
The affected gene causes lower limb spinal muscular atrophy, a rare neuromuscular condition. “Therefore Sebastian has little to no movement in his lower limbs.
“He also does not produce the correct amount of protein to make his muscles grow so has low muscle tone throughout his body.”
Sebastian, who has lived in Brighouse with his family since 2016, has only recently learnt to chew and swallow food due to difficulties with the muscles in his throat and his lower limb struggles mean he continues to rely on a wheelchair.
Though he does have a manual chair, he is limited as to how much he can use it independently, particularly on any uneven terrain, due to the weak muscle tone in his upper body.
The fundraising campaign has therefore been set up to try to cover the £12,000 cost of a new electric wheelchair that will enable Sebastian to maintain his independence over the coming years.
The new chair will also be adjustable, raising and lowering Sebastian to different heights, to better support him and his family as he gets older.
At school, for example, he currently has to use multiple chairs and a variety of equipment in order to carry out activities at different heights, but his new chair will be able to be adapted to suit different desk levels and classrooms.
The raising and lowering nature will also take the pressure of lifting and moving Sebastian off Victoria, who has a heart and lung condition, and Steven, who was medically discharged from the Army after an injury whilst serving in can be very difficult, especially when we have other foster children.
“The electric wheelchair means we are all able to enjoy doing family things together.”
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“My husband suffered a back injury so lifting and moving Sebastian is quite hard for both of us,” says Victoria, a former NHS worker.
“If we went to the zoo for instance, we’d lift him up and down to see. But he’s nine now and extremely heavy.
“He needs to be able to lift himself up. The new wheelchair will mean he can lower himself up and down to different heights of surfaces.
“Sebastian uses his chair for everything. This new one would allow him to essentially just be in one chair and not have to transfer to lots of different equipment, especially at school.
“We are looking ahead to him going to high school.
“It’s a big thing to be able to get yourself around and be independent and also to be able to fit in lots of different classrooms on lots of different desks.
“Even things like doing PE, this new chair is faster and will enable him to keep up with his peers.”
For the past two years, Victoria and Steven, now a vehicle mechanic, have been registered foster carers, currently looking after children on short term placements.
“The electric wheelchair allows Sebastian to go out and do things with his friends or his brother and with us,” Victoria says.
“He is very outgoing and is friends with everyone.
“He loves to join in with everyone else, doing the same activities as his peers and often older his brother. The chair allows him to do all this independently.”
The fundraising page was launched at the end of June and has raised more than £1,700 so far.
Set up on behalf of Victoria, it says: “If you can spare any amount to donate to Sebastian’s fund, he promises it will be used towards making the most of freedom his chair brings, which includes excessive amounts of smiles and laughs.”
To donate, visit www.gofundme.com/f/little-boyneeds-wheelchair