Oliver is turning 2 years old! He has grown so much this past year and brings so much joy to our family. He loves playgrounds, music, animals, and ice cream. He is putting words together in short phrases and has his older siblings wrapped around his little finger. He is so loved, but we know that Oliver needs help despite his life now.
Last year, we were deeply shocked and saddened to learn that both Oliver and Joey have a devastating disease called GM1 Gangliosidosis.
In April of 2017, after an odyssey of searching for answers, Oliver's older brother Joey was diagnosed with GM1 Gangliosidosis type 2, a neurodegenerative genetic disease that is always fatal in children. The diagnosis shook us to our core and left us reeling. Just two months later we learned that Oliver is also affected by GM1. We were devastated.
GM1 Gangliosidosis (type 2) is an inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord. It has no treatment options other than symptom management. As the disease progresses it causes
*Loss of speech
*Loss of ability to walk
*Loss of motor control
*Skeletal changes including scoliosis and hip degeneration
*Loss of ability to eat
We have spent the last several years watching helplessly as Oliver's brother Joey slowly loses his abilities. Oliver is currently asymptomatic, but it is only a matter of time before the disease has caused enough damage to his little body that symptoms start to appear and cause irreversible damage. We dread the day that his development grinds to a halt and then starts to regress.
Instead of looking to a future of sports, music lessons, schooling, and independence, we look toward Oliver's future and plan for wheelchair accessible homes, speech generating devices, care plans, and burying our son in what should be the prime of his life.
But there is hope! Research for treatment options, including gene therapy, for GM1 Gangliosidosis have made much progress and are close to trials. The scientific approaches have been proven in the lab, but have not yet made it to humans. We need your help to contribute to bringing this research to children like Oliver and Joey. Because Oliver is asymptomatic, he could benefit greatly if trials become available soon.
Funding is key, and we need everyone's support. Your donation is tax deductible and goes 100% towards research. Every dollar counts and makes a real difference for Oliver and all children affected by GM1.
The Cure GM1 Foundation was established with the sole purpose of funding research for GM1. It’s a 501(c)(3) nonprofit with no paid employees. The maximum amount possible is being put towards helping kids like Oliver and Joey have a chance at life.
Please consider a donation to the Cure GM1 Foundation in honor of Oliver's second birthday and help fund a cure. Please help save our sweet boys.
Please SHARE and please help before it’s too late.