A FUNDRAISER set up for an Accington boy with an incurable neurogenerative disorder has exceeded £ 5,000 in donations.
Four-year-old Jeffrey Charlesworth is one of five British children diagnosed with the rare Battens disease CLN2 each year.
The disease is an incurable neurodegenerative disease initially signaled by her seizures in early 2020.
The boy’s aunt, Louise, said: “Jeffrey is a brave, determined, loving, happy and energetic little boy who loves nothing more than playing with his trains and dancing to The Wiggles!
“On May 6, he was diagnosed with the rare disease CLN2 Late Infantile Battens, an incurable, life-limiting neurodegenerative disease with a life expectancy of only 6 to 12 years.
“He first presented about 18 months ago with seizures and regression in speech and the doctors believed he had epilepsy. He will need full-time care when he is six years old.
However, it is possible that Jeffrey will soon be eligible for symptom management surgery, which would mean a trip to Great Ormond Street Hospital in London for an evaluation and testing.
If eligible, the young “soccer fan” will undergo a complex operation which will see a shunt placed under his skull into which the drug Brneura will be infused every two weeks, which can help slow the onset of the disability.
This means Jeffrey will have to travel to London every two weeks for the rest of his life.
The funds raised by the online appeal of the family will pay for the cost of it, as well as the many adaptations that will have to be made at the family home.
Miss Lawson said: “Children suffering from this disease ultimately need specialized treatment in all aspects of their lives and suitable housing will also need to be found to enable them to have a better quality of life.
“Any new housing will have to be adapted to its needs; a powder room installation, specialized flooring, widening of doors and hallways and more.
“We are seeking donations to help give Jeffrey the best possible life, give the family special experiences and time together, and help with the financial impact of attending appointments, providing care and get whatever he could possibly need. ”
Visit the GoFundMe website and look for Louise Lawson’s appeal, “Jeffreys Battle With Battens Diseaseâ€.
