Parents of terminally ill son fundraise nearly four times their charity target

Michelle and Tim Garvey from Saxilby near Lincoln have nearly quadrupled their fundraising target to raise money for their terminally ill son, raising £3,873 from a starting goal of £1,000.

Lucas, 9, was diagnosed with Metachromatic Leukodystrophy (MLD) in July this year, which is a very rare, life-altering and life-limiting genetic condition.

Lucas’ parents were told by the Manchester Centre for Genomic Medicine at St. Mary’s Hospital last week that tragically, Lucas isn’t eligible for life-saving treatment, as he has declined too much for it to be effective.

Lucas will be under the care of the Neuro-Metabolic Team at Queen’s Medical Centre Nottingham for ongoing support.

Parents Michelle and Tim noticed a year ago that Lucas was struggling at school and his walking had changed.

Michelle explains: “He’d started walking on his tiptoes, on the balls of his feet.

“We originally thought it was autism and so we were going through that process with the hospital.

“The Special Educational Needs teacher noticed that he had ‘blank’ time, but we just thought it was sensory overload and possibly absence seizures.

“So when we did see their consultant they sent him for an EEG. It picked up that things weren’t quite right and he needed an MRI scan, the results of which indicated MLD.

Michelle and Tim Garvey with Lucas, 9, and Penelope, 6. | Photo: Michelle & Tim Garvey

“He then had to have his whole genetic code mapped to see what was going on, which confirmed his condition.”

The terminal condition is damaging his brain and nervous system, affecting his gross and fine motor skills and cognition.

The deterioration will persist, causing muscle wasting and weakness, muscle rigidity, developmental delays, loss of speech, progressive loss of vision leading to blindness, convulsions, impaired swallowing, paralysis, and dementia.

Michelle and Tim have not been told how long Lucas has, but are determined to make the most of their time with him and do much as they can while he is able and mobile.

They say that Lucas has many loves including being outside, going to parks, visiting the seaside, animals, playing Playstation lego games, watching his favourite films: Camp Cretaceous, Paddington and Disney films and of course, eating cake.

The money will help fund specialist equipment, such as a wheelchair, that Lucas will eventually require as his condition worsens due to the degenerative disease.

Because MLD is genetic, if Michelle and Tim’s daughter, Penelope, aged six, has the condition, she will be eligible for gene therapy.

However it is a new treatment and there are significant risks that go along with it.

Penelope is too young to grasp exactly what is happening to Lucas, but she is aware he is receiving extra help and her parents say she is being very loving towards her older brother.

Michelle described having MLD as “incredibly rare” and that it is like a “spelling mistake on the chromosome”.

Lucas playing at pirates. | Photo: Michelle & Tim Garvey

She said: “The chances that Tim and I met and both having the same genetic problem is like 0.001% of the population. It’s just horrendous.”

However, Michelle said of the amount raised for Lucas: “It’s incredible. The love and messages of support are truly appreciated.

“I felt bad even putting £1,000 as a target on the GoFundMe page and had no kind of wild expectations, it’s just been amazing.

“It means a lot to know we’re not going through this on our own.

“We just want to be able to give him as many happy memories as we can. He loves being by the sea, he loves dinosaurs.

“We just found out that the Yorkshire Wildlife Park have got something on at the minute, where they’ve got big dinosaurs. So just anything that takes his fancy.

Michelle added: “I’m grateful that Jurassic Park isn’t a real place because that would be his ultimate destination.

“He’s quite young for his years, really – he’d be more than happy with Legoland.”

Michelle wanted to thank the people who have supported the GoFundMe page: “We’re incredibly grateful for the support that we’ve been given. It’s blown any expectations or hopes that we had out the window.

“We’re incredibly grateful that we can build memories for us all and happy experiences.”

Hopefully with the money raised Lucas will be able to enjoy, not just endure, what time he has left.

Donate to Lucas’ GoFundMe page here.

Lucas and his sister Penelope. | Photo: Michelle & Tim Garvey