Memorial Funds for Viola

December 29th 2023 Viola passed away peacefully at home with her loved ones surrounding her. We are currently trying to raise money for funeral/memorial costs to help take some pressure off the family as they navigate this new world without their little girl.

Hello, my name is Becky and I have started this GoFundMe on behalf of my dear friend Heather Kaiser and her family. Not long ago they received a diagnosis for their baby girl that brought them to their knees. If you could take the time to read it, their story is below:

"As many already know, on October 4th, 2022 our family found out the most devastating news of our lives. Our baby girl Viola was diagnosed with a rare disease called Sandhoff Disease. Infantile Sandhoff disease is a rare lysosomal storage disease that causes destruction of nerve cells and damages the brain and spinal cord. The most common type of this disease causes rapid progression of mental and motor decline. It’s estimated to affect 1 in 1,000,000 individuals. Most live from 2-5 years of age. We are absolutely heartbroken, There is no cure.

There is a clinical trial going on in Massachusetts and Ontario that only started a short time ago. We have asked our doctor at the stollery to see if Viola is eligible to try out this gene therapy. We don’t know if she will be accepted, or if it will help our little girl. But it’s all we have.

We are hoping with every ounce of our beings that she will be our miracle and find a way to survive and live a somewhat normal life.

She is the one we waited for our whole lives. Our whole family loves her to bits and is still in shock from the news.

We have 5 children in total, a 16 year old boy, 14 year old boy, 11 year old boy and our boy and girl twins that are 8 months old.

As things are sinking in we realize that we are going to need help financially. The funds would be used to help me stay home from work to care for Viola, possible travel expenses for the trials, treatment or equipment she may need down the road.

Please send ALL the positive vibes. Pray for miracles and if anyone has any suggestions on anything please reach out. We will try anything. And go absolutely anywhere."

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If anything, please share this to everyone you can and send this family all the light and positivity as they figure out their new life together.

Thank you for taking the time to read this.