Help support Levi ❤️
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February 28th is rare disease day & this is our second year to raise awareness for our son Levi. As most of you know Levi was diagnosed in July 2020 with Tay-Sachs disease. Tay-Sachs disease is a rare disorder passed from parents to child. It's caused by the absence of an enzyme that helps break down fatty substances. These fatty substances, called gangliosides, build up to toxic levels in the child's brain and affect the function of the nerve cells. As the disease progresses, the child loses muscle control. Eventually, this leads to blindness, paralysis and death. Our lives changed forever after we were told his diagnosis. We were no longer trying to figure out what was wrong with our son, we were now caring for a child with a rare genetic disease. Our days constantly change as we adapt to Levi’s needs & everything we do is on a schedule for him. It’s hard & challenging caring for someone with a rare disease but we take each day as it comes. We try to make the best out of each day & spend as much time as possible with our special boy!
Our goal is to continue to raise awareness about Tay-Sachs & other rare diseases. We want to share Levi’s story with as many people as possible & we encourage you to share his story too.
I am also trying to raise money for a P-Pod chair. This chair is a Postural Support System that offers a whole different seating experience for those with specialized seating needs. It's the perfect alternative seating solution for Levi & it would help him be so much more comfortable!
All the funds raised are used for Levi & extra expenses insurance doesn’t cover. Thank you everyone for all the love & support you have given us over the last year & a half. Thank you for loving our family & for loving our son! We will be forever grateful for all the generosity we have received. Please continue to pray for Levi & share his story!!
Organizer
Cynthia Frost
Organizer
Sinton, TX