Former Chesterfield mum pleads for help to save life of her brave little boy at Amsterdam medical trial

A former Chesterfield woman whose toddler son suffers from a rare progressive brain condition is pleading for help so he can attend a pioneering medical trial in Amsterdam.

Thursday, 6th May 2021, 4:06 pm

Heather Bond’s four-year-old son Eli Newsome was diagnosed last year with leukodystrophy, which causes deterioration of the white matter, or myelin, in the brain.

Heather, 30, and Eli’s dad James were told their son was likely to live only another five to 10 years.

The couple were given hope when they discovered a professor in Amsterdam was carrying out medical trials on treatment for leukodystrophy which could prolong or even save Eli’s life – and he fits all the criteria to be included.

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Brave little Eli Newsome has a rare brain illness and his family is raising funds so he can attend a medical trial in Amsterdam.
Brave little Eli Newsome has a rare brain illness and his family is raising funds so he can attend a medical trial in Amsterdam.

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Heather, who left Chesterfield six years ago but still has family and friends here, said Eli’s diagnosis last year had been ‘heartbreaking’ for her, James and Eli’s sisters Peyton, 10, and seven-year-old Heidi.

"Eli woke up one morning and couldn't function his legs,” Heather, who attended Dronfield’s Henry Fanshawe School, said.

“I thought he had slept funny. But after two days of falls every time he tried to walk I took him to A&E and they told me he had irritable hip syndrome and it would pass.”

After no improvement, Eli was given a CT scan, and Heather admits the two hours waiting for the results ‘felt like a lifetime’.

“The doctor told me Eli had something wrong with his brain and needed to go for an emergency MRI scan.

"This told us he had a brain disease called leukodystrophy. It is very rare and there is no cure. They told me life expectations are from five to 10 years.

"We were devastated. Eli is James’ only child. We never in a million years thought we would have to face the thought of losing a child. No one does do they?”

When Heather found out abut the trial in Holland on May 21, she was determined to get Eli there – but faced the challenge of how to fund the trip.

“My friend asked if she could do this fundraising for Eli,” Heather, who now lives in Leeds, said.

"Even though we both work, we have to go away for eight weeks and bills don’t stop.

"It’s overwhelming but we appreciate every person who has helped.”

To help Eli, visit the family’s fundraising page.

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