New wheelchair and home chair for Sakura

Hi, her name is Sakura; sadly sakura was diagnosed at 4 months old having scoliosis, then at 3 years old I got told she had Jouberts syndrome; where she has traits of cerebral palsy, scoliosis, and started having seizures!

And to be told in a room full of people, she’ll never walk or talk and research shows people who have this syndrome only live til 8 years old. Obviously I was devastated! But I was determined to help Sakura and hopefully she’d prove them wrong and overcome some of the challenges.

Since she was born I always took her to mainstream groups, where she mixed with active kids and learn from watching others, then pre-school and primary she went to mainstream, it got overwhelming for her as she couldn’t talk, they wouldn’t use BSL and just tried to use a TalkPad, she wasn’t interested in, leaving mainstream she chose her current special school, where she’s thrived! Her teacher encourages to use BSL and the TalkPad which works with age. She’s 16 this year, and she stood fir the first time last summer, on,y to shock me more on camera as she took 2 steps, in tears of happiness, she’s proven every medical professional from lil all wrong!

Her spine didn’t improve and in 2020 due to have spinal fusion it ,was delayed due to lockdown, she had rare case of torticollis come back, which is a stiff neck one side, as lockdown went on her neck got worse, today she has to where a neck brace to keep her head up. She had the surgery in the summer lockdown finished, recovering after 3 days of open surgery on her back, only cause she wanted to go home, we got told normally takes a week or longer to recover! Amazing girl! She always smiling we call her our funny bunny because of this smile!

We named her Sakura which means cherry blossom in Japanese because no matter how much she’d go through in life, she’d always bloom in her own time; each milestone beautiful and proud! And she is always doing just that xx

We’re looking to get sakura a new active wheelchair, custom to her needs, where she can both push herself or if she gets tired turn it to electric mode long distances, becoming more independent as she leaves school and goes to college.  And a new comfortable postural seating chair, which sadly the NHS won’t fund as it’s not on their list of supporting, so we have to find it ourselves.  The new chair will fully support her Scoliosis and the torticollis whilst chilling and having fun! 

if you can help just a lil towards our goal thank you so much x