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Former expat mom crowdfunds for help for her son
| Published: | 29 Jun at 6 PM |
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Kate Ogborne, her husband Dave and their son Jake were planning their move to the Costa del Sol when her baby son began showing worrying symptoms.
The 14-month old had started walking and was attempting to run but fell over much more than is normal. Concerned, Kate took him to her GP, who assured her he’d grow out of it, adding there was no need to cancel their emigration plans. Once they’d arrived in Malaga, it became obvious he wasn’t going to ‘grow out of it’. Scans at hospitals in Malaga didn’t help as the results were inconclusive, but one Sabinillas-based doctor suggested Jake might have some type of muscular disease.
After two years in Spain the family were forced to return to the UK to keep trying to get a firm diagnosis and prognosis for their little boy. Five months after they arrived back in the UK, four-year old Jake was finally diagnosed as having spinal muscular atrophy, a vicious degenerative disease. Jake’s father works in IT and, as they still have a property there, Kate flies back to Manilva every so often when she can find time from her dog-walking business and her care for her son.
Jake is now 17, and until last year was still just about able to walk, but eight falls in one day damaged his ankle so badly he’s now permanently in a wheelchair. His parents help as much as they can, but the teenager is so weak he struggles to sit up whilst he’s in bed and has problems swallowing. There’s only one drug, Spinraza, which can help him, available in Spain, Portugal, Estonia, Switzerland and several other countries, but it’s disallowed in the UK ‘s NHS due to its astronomical cost of £125,000 per shot. Injection of the drug in the spine has to be given between three and four times every year.
Kate feels totally helpless knowing there’s a drug on a shelf somewhere which would give her son his life back, saying greedy pharmaceutical companies have set the price so high the NHS will never be able to afford it. Not knowing what else to do, she’s begging expat residents in her former Spanish home town to donate just £2 each – the price of a coffee – at the crowdfunding ‘just giving’ online site. Her page has been up for a month, during which time she’s received over £6,000. It’s a long way to go to fund even one injection, but Kate’s not giving up.
The 14-month old had started walking and was attempting to run but fell over much more than is normal. Concerned, Kate took him to her GP, who assured her he’d grow out of it, adding there was no need to cancel their emigration plans. Once they’d arrived in Malaga, it became obvious he wasn’t going to ‘grow out of it’. Scans at hospitals in Malaga didn’t help as the results were inconclusive, but one Sabinillas-based doctor suggested Jake might have some type of muscular disease.
After two years in Spain the family were forced to return to the UK to keep trying to get a firm diagnosis and prognosis for their little boy. Five months after they arrived back in the UK, four-year old Jake was finally diagnosed as having spinal muscular atrophy, a vicious degenerative disease. Jake’s father works in IT and, as they still have a property there, Kate flies back to Manilva every so often when she can find time from her dog-walking business and her care for her son.
Jake is now 17, and until last year was still just about able to walk, but eight falls in one day damaged his ankle so badly he’s now permanently in a wheelchair. His parents help as much as they can, but the teenager is so weak he struggles to sit up whilst he’s in bed and has problems swallowing. There’s only one drug, Spinraza, which can help him, available in Spain, Portugal, Estonia, Switzerland and several other countries, but it’s disallowed in the UK ‘s NHS due to its astronomical cost of £125,000 per shot. Injection of the drug in the spine has to be given between three and four times every year.
Kate feels totally helpless knowing there’s a drug on a shelf somewhere which would give her son his life back, saying greedy pharmaceutical companies have set the price so high the NHS will never be able to afford it. Not knowing what else to do, she’s begging expat residents in her former Spanish home town to donate just £2 each – the price of a coffee – at the crowdfunding ‘just giving’ online site. Her page has been up for a month, during which time she’s received over £6,000. It’s a long way to go to fund even one injection, but Kate’s not giving up.
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