Elisa Menendez
SHE always knew there was something wrong with her son.
Kate Ogborne first worried as she watched 14-month-old Jake struggling to run and repeatedly falling over.
The mum was labelled ‘paranoid’, when she took him to a GP, who told her he’d ‘grow out of it’ and was advised to carry on planning a dream move to the Costa del Sol.
But Jake didn’t grow out of it.
Various hospital scans across Malaga led to inconclusive results, until a Sabinillas-based doctor feared Jake may have a muscular disease.
After two years in Manilva and numerous false diagnoses, the Ogbornes were forced to go back to Bristol after medical care became too difficult to handle in Spain.
An agonising five months later, four-year-old Jake was finally diagnosed with spinal muscular atrophy (SMA) – a ‘cruel’ degenerative neuromuscular disease.
Fast forward 13 years and the determined mother-of-two who regularly flies back to Manilva, is appealing to expats on the Costa del Sol to help raise £500,000 for a drug that could make Jake walk again.
“I’m on a mission, I need to help my son,” she added.
Kate, 51, has raised over £6,000 after setting up a crowdfunding page just over a month ago and hopes to make the hashtag #TreatmentForJake viral, encouraging donations of £2 – the price of a coffee.
Jake, now 17, had been using a wheelchair sometimes but was still able to walk – until last summer when he fell over eight times in one day and destroyed his ankle.
He has been unable to walk ever since.
Now Kate and Jake’s father, Dave, 55, help their son where they can but the teen struggles to sit up in bed and even swallow at times.
“We’ve tried everything – splints, a walking aid but he just doesn’t have the strength to walk.
“He wants to stay as able as possible and doesn’t want an electric wheelchair but it’s hard to manually propel himself,” added Kate, who owns a dog walking company, while father Dave works in IT.
SPINRAZA is currently the only drug newly available for people with SMA and while it is available in Spain, Portugal, Switzerland and Estonia among others, it has not been approved on the NHS yet.
Although the family still own a property in Manilva, they are not Spanish residents and therefore not eligible for treatment.
The drug, which costs £125,000 per shot is injected into the spine three to four times a year.
Expressing her frustration at the astronomical price, Kate feels ‘completely helpless’.
“There’s a drug sat on a shelf but because these greedy pharmaceutical companies have priced it so high there’s no way we can access it. Can you imagine if one of the CEO’s children had it?
“The NHS are waiting to approve it but we know it’s not going to happen because they can’t afford it. So much money could be saved for the NHS by eliminating the physio, the occupational therapy, and the consultants needed to help people as they get worse,” she said.
Currently the treatment is only available for free for babies with Type 1 SMA – the most severe form of the disease which is fatal.
Jake has Type 3, meaning eventually his muscles will atrophy and could face severe respiratory problems.
“That’s brilliant they are getting the help as otherwise they’d die. But what about the others? What about quality of life?” she added.
Growing up Jake was crippled with anxiety, suffering up to ten seizures a day.
“He’s such a sensitive sid but he’s so stoic. He was always in pain as a child but never said it, he always wanted to keep going,” said Kate.
Despite the struggles Jake has faced in his young years, he’s not allowed his illness to dictate his life.
Recently the teen, who has a girlfriend called Ella, found his niche in modelling by raising awareness for disabilities, featuring in campaigns for the likes of Nationwide Building Society and the Red Cross and hopes to study psychology at university.
If you would like to donate, visit: www.justgiving.com/crowdfunding/treatment4jake
