Save Heath from becoming completly trapped in his body
Spinraza is the only hope we have of saving Heath and giving him a better quality of lifeBay of Plenty
Heath has spent his short, almost, three years of life fighting Spinal muscular atrophy - Deadliest genetic disease in children.
At 15 months old heath was diagnosed with type 1 SMA. A genetic mutation that destroys the motor nerve cells in the spinal cord. Slowly SMA will rob Heath of every physical ability he has. From holding his water bottle to cuddling his teddy. Eating, drinking, talking, smiling and eventually his ability to breath unassisted will all be stolen away from him.
His ability to crawl or walk was stolen from Heath the day he was born.
In that moment of diagnosis, our entire lives were destroyed. Our perfect, chunky, happy little boy was given a death sentence and there was nothing we could do to fix it.
We were sent home to take a life time of photos and enjoy what time we had.
Almost 2 years on Heath has has spent time in ICU and knows almost every paediatric nurse / doctor in Rotorua hospital by name and face.
But he hasn't given up and is beating every odd he's been given.
Heath urgently needs to start receiving the only treatment currently avalible for SMA. This treatment is the only chance he has at a better, longer life. He's never been able to crawl or walk - at almost three years old his knees are already starting to lock in place and both hips are out of joint due to lack of weight baring.
Heaths mind and personality is 100% unaffected He will one day be trapped in his body
This treatment / Spinraza will change it All!!!
Spinraza has been proven to stop the disease in its tracks and give the sufferer strength and abilities they had never had. The younger a person receives treatment the more responsive their body will be. Every day with out Spinraza motor neurons are dying, irreversible damage is being done.
Sadly treatment is not avalible in NZ - believe me we are fighting with everything we have to change that.
We have had confirmation the manufacturing company will sell us spinraza privately. However this comes with an exceptionally high price tag. We've looked at leaving our families, who we rely on so much when heaths sick, our jobs, taking our 2 older sons out of their comfort / safe zones and moving across to Australia to access treatment for heath. Fincially we just can't do it. And that breaks our hearts more than we can express.
So we are begging for help
We are trying to fund Treatment for Heath for 1 year - while we continue to fight our system to value all SMA fighters here in NZ and publicly fund Spinraza
The reality is even if they do start the process tomorrow to begin funding Spinraza it's still going to be months if not excess of a year before it becomes avalible.
The first year consists of 4 loading doses
over three months followed by a single treatment every 4 months. A total of 6 treatments in year 1
Treatment is going to cost us $110,000 per injection = $660,000 for the first year
We are hoping for a miracle
Please please help save Heath and give him a better quality of life
We welcome you all to follow heaths journey
Thank you so so much for your love and support
Anna Sutherland's involvement (page creator)
Heath is my son. He has type 1 /2 SMA and we are desperate to get heath treatment. Every cent raised will go towards heaths treatment and a better quality of life for him
Use of funds
Every cent will go directly towards treatment for Heath and medical costs associated with administration etc
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This page was created on 5 Apr 2019 and closes on 5 Apr 2021.