VIDEO: Big funds for a little lad with rare disease

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A non-profit organisation has stepped up and donated big funds to a youngster suffering from a rare disease after reading his story in the County Times.

The parents of 19-month-old Maxwell Smith have expressed their immense gratitude after receiving a generous donation from the Chanctonbury Lions Club.

JPCT 270813 Chanctonbury Lions Club helps Maxwell Smith 18 months. Lions Alan Jenkins left and Les Wilson with Maxwell and parents Peter and Emma. Photo by Derek Martin

JPCT 270813 Chanctonbury Lions Club helps Maxwell Smith 18 months. Lions Alan Jenkins left and Les Wilson with Maxwell and parents Peter and Emma. Photo by Derek Martin

Mother Emma Smith said: “It’s absolutely fantastic and it’s nice to know that the community are supporting us and Maxwell as a family.”

Chanctonbury Lions Club member Les Wilson said they wanted to support the Thakeham-based family because ‘that’s what Lions do’.

“These are the real issues as far as we’re concerned. This is helping a local family who are a lot worse off than we are,” he said.

“We don’t just dish the money out, we always come and check it out for ourselves, but when you see a situation like this it’s a no brainer.”

Born a healthy baby, Maxwell was nine months old when he contracted a bad case of tonsillitis and was admitted to hospital in November.

After a series of treatments, he was diagnosed with Mitochondrial Disease and is now unable to move his arms or legs and relies on a ventilator 24 hours a day.

Last year the Smiths launched the charity ‘Little Maxwell’ to help care for him at home after he spent almost a year in hospital.

The donation has bought a hand-held saturation monitor, a suction machine and physiotherapy for three months - all worth approximately £1,800.

Emma said: “Because it’s a muscle weakening disease it will hopefully maintain the muscle strength he has left.”

Les added: “This machinery will allow them to take Maxwell out in a car, because the machinery that they already have is massive.”

Another club member Alan Jenkins said the charity came to the attention of the Lions after reading Maxwell’s story in the County Times.

He said: “It was brought up at our meeting and we all agreed to help out.”

More good news came to the Smiths when their application to extend and convert their garage into a spacious room to facilitate Maxwell and all his equipment was approved by district planners at last week’s development committee meeting.

Adam Breacher (Con, Billingshurst) said at the meeting: “As a council we are responsible for the health and wellbeing of the people who live in the district.

“I support the officer’s recommendation.”

Maxwell still needs your help. If you would like to donate or you are a business that can help with the construction of his new room, visit littlemaxwell.org, tweet @ littleMaxwell14, or check out ‘Little Maxwell’s Boss Squad’ on Facebook.