Covie Vaughne Davey came into this world on the 2nd September 2019 happy, healthy and cute as a button! Mummy and Daddy, Bree and Scott were besotted and so in love. They enjoyed their newborn bubble for 10 weeks. 10 weeks of baby cuddles, smiles and the cutest little giggles, blissfully unaware of what was to come. At 10 weeks old Covie was diagnosed with the most severe form of Spinal Muscular Atrophy (SMA), type 1. Their world was shattered. SMA is a rare neuromuscular disorder characterised by loss of motor neurons and progressive muscle wasting and untreated leads to death before the age of 2.
At 12 weeks old Covie began the only available treatment in Australia which involves a drug called spinraza being injected into the spinal fluid surrounding the spinal cord in the lower back through a lumbar puncture. He is currently responding positively to the treatment.
Unfortunately spinraza is not a cure for SMA. This is the reason we have set up this page for Bree and Scott. The only cure for SMA is a new drug called Zolgensma , a once off injection that can only be given to children under two years of age. It replaces the missing gene entirely. Zolgensma was only approved in America last year and is not yet approved for use in other countries, including Australia. It comes with a price tag of 3.1million Australian dollars, making it the worlds most expensive drug. This treatment is designed to deliver a functional copy of the gene that covie is missing (SMN 1). With this wonder drug on the market it offers Covie a chance at improved or even a normal life and the hope that one day he can play fetch with his dog Rory, kick the football with his cousins and hopefully join daddy on the golf course.
Our ultimate goal is to get Covie the zolgensma drug... that’s why its important we raise money as soon as possible because little Covie doesn’t have much time. He needs to get the treatment before his 2nd Birthday. We understand we have set the bar high at $3.1 Million and if unfortunately we don’t reach our goal then we want this money to be for Bree and Scott to help ensure they can spend as much time as they can with Covie. So please, we are asking that you help this beautiful family that does not deserve what is happening to them. Even if it's just a small donation, every little bit helps. But if nothing else we ask that you do some research, find out more about SMA and talk about it, help raise awareness about this cruel, devastating disease.
Making a donation for you only takes a couple of minutes while for Covie it could mean he’d be cured forever. Please, giving is not about making a donation.. it’s about making a difference and a better life for Bree, Scott and our little Superhero Covie.
- Terri Shanahan
- Maahir Bhamra
- Judith Balsaras
Organizer and beneficiary
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