Blackburn mum’s plea for oxygen tank for ‘train mad’ son, 4, with rare lung disease

Sadye Matula

A single mum from Blackburn is fundraising for an oxygen tank for her ‘little boy’ who relies on overnight oxygen due to rare lung disease. ‘Train mad’ Harry was diagnosed with NEHI (neuroendocrine hyperplasia of infancy) in August 2019, only a few months before his third birthday. It came after […]

A single mum from Blackburn is fundraising for an oxygen tank for her ‘little boy’ who relies on overnight oxygen due to rare lung disease.

‘Train mad’ Harry was diagnosed with NEHI (neuroendocrine hyperplasia of infancy) in August 2019, only a few months before his third birthday.

It came after an eight night stay in hospital after “lots of bouts of illnesses and chest infections”, his mother, Jessica Orme said.

NEHI is a type of rare lung disease that has no specific treatment but requires oxygen supplementation and specialty care.

Jessica told LancsLive: “As Harry gets older he will be able to have lung function tests, but doctors believe he will be on oxygen until he is at least eight years old”

Like most children his age, Harry started school last week. Mum Jessica said he was “absolutely exhausted, tears every morning, absolutely shattered, but he is enjoying it.”

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Harry’s diagnosis means that he does “quite well” during the daytime, although he does continue to get “breathless” and “tired”.

On long walks he requires a buggy, and whilst the family try to lead a “normal life as much as possible”, they have to take things “slowly” due to the nature of his condition.

“Night time is when we’re really affected,” Jessica said. “If we want to do anything we have to plan it weeks in advance, if we want to go to a friend’s house we have to book oxygen which has to be done seven days in advance, we can’t do anything spur of the moment.”



‘Train mad’ Harry needs an oxygen tank to help with overnight care

Harry’s condition means that he relies on his mum’s care throughout the night.

Jessica wrote that as Harry ‘relies on overnight oxygen which is provided by a very large and heavy oxygen concentrator which cannot be moved, simple sleepovers at Grandparents are a ‘no, no’ as it involves being super organised and organising oxygen weeks in advance’.

A sum of £2600 would purchase Harry a portable oxygen concentrator which would allow his to stay over at his grandparents, ‘at friends houses’ in the future or without his mum.

At present, the fundraiser has received £444 in donations.

Jessica also hoped that the portable oxygen concentrator could enable the family to enjoy holidays abroad as oxygen is not provided for Harry outside of the UK.

You can donate to Harry’s oxygen tank fund here.

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