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Help Support Lewis – a Brave Little Fighter with a Rare Genetic Disorder
Lewis is a 3-year-old boy who has had a very tough start to life. At just 17 days old, he became critically unwell with sepsis and meningitis, and since then he has spent much of his young life in hospital.
Doctors have since discovered that Lewis has an extremely rare genetic disorder (SMARCB1) – with only four other children known worldwide to have the same condition.
This has led to many serious health challenges, including:
- Hydrocephalus (fluid on the brain) – Lewis has undergone four brain surgeries and now has a shunt fitted.
- Severe developmental delay and intellectual disability.
- Breathing difficulties, requiring airway surgery, ventilation at night, and ongoing monitoring.
- Unsafe swallow – Lewis is PEG-fed and cannot eat orally.
- Kidney reflux and frequent infections, requiring daily catheter care.
- Heart complications, including a bicuspid aortic valve.
- Non-verbal and immobile, relying on specialist equipment and therapies.
Despite all of this, Lewis continues to amaze everyone with his strength, resilience, and smile. His family are dedicated to giving him the very best life, but the reality is that his care comes with huge financial costs.
These include:
- Private physio, hydrotherapy, and rebound therapy sessions to help him reach his full potential.
- Specialist equipment to support his mobility and comfort.
- Essential home adaptations (wet room, ramps, hoists, changing table).
Lewis’s mum had to give up work to care for him full-time, so every bit of help makes a difference.
I am running a half marathon in April 2026 to raise money for Lewis and his family. Every donation will go directly towards supporting his care, therapies, and the vital adaptations that will make life easier and more comfortable for him.
Thank you so much for reading Lewis’s story, and for any support you can give.
Organizer and beneficiary
Sarah Bond
Beneficiary