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Brave 5-Year-Old Fights Rare Mutation, Parents Seek Support

8/4/2025

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Summary

Story summary

Harrison, a brave five-year-old from Ilkeston, Derbyshire, battles a rare Filamin C gene mutation that jeopardizes his spine, heart, and lungs. His devoted parents, Kelham and Shannon, face daily fears of cardiac arrest. To support their son during his grueling 260-mile weekly journeys to Great Ormond Street Hospital, they are raising funds for a specialized car seat.

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Story summary

Harrison, a brave five-year-old from Ilkeston, Derbyshire, battles a rare Filamin C gene mutation that jeopardizes his spine, heart, and lungs. His devoted parents, Kelham and Shannon, face daily fears of cardiac arrest. To support their son during his grueling 260-mile weekly journeys to Great Ormond Street Hospital, they are raising funds for a specialized car seat.