Home / Health / Derbyshire Family Fundraises for Specialized Car Seat to Aid 5-Year-Old's Rare Condition
Derbyshire Family Fundraises for Specialized Car Seat to Aid 5-Year-Old's Rare Condition
4 Aug
Summary
- 5-year-old boy has rare genetic mutation affecting spine, heart, and lungs
- Family makes 260-mile round trips weekly to Great Ormond Street Hospital in London
- Parents "constantly worry every day" about potential cardiac arrest
As of August 4th, 2025, the parents of a 5-year-old boy in Ilkeston, Derbyshire are facing immense challenges due to their son's rare medical condition. Harrison, the young boy, has been diagnosed with a rare genetic mutation in the Filamin C gene, known as FLNC, which affects his spine, heart, and lungs.
According to Harrison's father, Kelham, and stepmother, Shannon, they were shocked when they first learned about their son's condition, as it is estimated to only affect around 15 people worldwide. The family now finds themselves making a 260-mile round trip to Great Ormond Street Hospital in London every week to receive specialized care for Harrison.
The constant worry and stress of Harrison's condition have taken a toll on the family. As Shannon explains, they "constantly worry every day" because there is "always a chance of cardiac arrest" with Harrison's rare condition. To make these weekly trips more comfortable for their son, the family is now fundraising to acquire a specialized car seat.
The Ilkeston community has rallied behind the family, offering support and donations to help ease the financial burden of Harrison's medical needs. The family's determination to provide the best possible care for their son is a testament to their unwavering love and resilience in the face of this challenging situation.
