A mum from Bristol is raising money for her little boy, after it was confirmed the NHS does not entirely fund the urgent aftercare he will need after a critical operation that will transform his life. On November 6, 2012, Monika Kowalska went into a sudden, early labour and gave birth prematurely to her son Kai, who then had a stroke.
Kai was then diagnosed with spastic diplegia, a chronic neuromuscular condition of leg spasticity (a type of cerebral palsy), which critically affects his leg muscles. Now aged nine, Kai, from Long Ashton, is an active, sports-loving young boy, who often feels excluded from his peers at school as he gets tired after walks, has a problem with his balance and feels very unstable while walking downstairs or down hills.
The young Bristol boy has been selected for a life-transforming operation, selective dorsal rhizotomy surgery (SDR), where nerve roots are cut in the spine to reduce leg spasticity. However, the NHS only partially provides the aftercare little Kai will need, which is two years of post-surgery, very intense physiotherapy - so Monika has taken to fundraising to support her young son.
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Monika spoke to Bristol Live about her experience trying to better Kai’s life, as well as more about the money the family need to raise. Giving birth to her son prematurely has been what has felt like a source of ‘guilt’ to her since Kai was born.
“Since Kai was born, I’ve felt guilty about the situation, even though I know I haven’t done anything wrong. Giving birth early, with no reason, it’s always there," she said.
“Kids at school have noted he walks in a different way. He sometimes feels excluded from his friends. He has some good friends at school but they can tell he’s ‘different’. As his mum, it breaks my heart. I know that, although the next two years will be very hard, this surgery will definitely help him walk properly, and this is the only thing I can do for him to help.”
Monika told Bristol Live that although the surgery is serious, it’s just the beginning for Kai. “The NHS funds basic physiotherapy for the first four months after surgery - one session per two, then three, then finally four weeks.
“This is amazing but not nearly enough. Kai needs professional physiotherapy two-three times a week for a minimum of two years on top of his daily exercises at home to strengthen his muscles and ensure the surgery is worthwhile.
“I don’t want to limit the physiotherapy Kai can access, as the surgery essentially cuts his nerves and restarts his muscles. He will have to learn how to walk again, and make his muscles work again, after surgery.”
Kai’s family are fundraising for a total of £15,000. This fundraised money will be used to cover all post-surgery physiotherapy costs as well as any other operational-related costs that may arise from the SDR operation or any future operations.
The most important thing in Kai’s life is sport. Less able-bodied than his peers, the operation would be life-transforming for the nine-year-old.
Mum Monika added: “He loves football and rugby. He also goes horse riding as part of some physio for disabled kids.
“He also loves reading and art, but I think sport is the most important thing in his life.” The surgery will mean Kai can, in time, walk with less difficulty, ensuring he can fulfil his passions at school.
You can donate to Kai’s fundraising page here and follow Kai’s Mission on Facebook .
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