Olly Belle Tay-Sachs Warrior

First post: Oct 11, 2019 Latest post: 6 hours ago
Thanks for visiting Olly Belle's Caring Bridge! We appreciate your support and words of hope and encouragement. We are the Chapman Family- Nate, Lora, Mara (5yrs), and Olly (1yr). We live in the northern suburbs of Minneapolis, Minnesota and love our family, friends, Substance Church, the great outdoors, and Minnesota WILD hockey!

WHAT DO WE KNOW?
~ Olly has Tay-Sachs Disease. This is a fatal genetic disease caused by the absence of an enzyme that helps break down fatty substances. These fatty substances (called gangliosides) build up to toxic levels in a child's brain and affect the function of the nerve cells. As the disease progresses a child loses their eye sight, hearing, muscle control, and leads to paralysis and death. Life expectancy is 2-5 years.
~ There is no cure for Tay-Sachs. There are only treatments to help ease symptoms and prolong quality of life.
~ Tay-Sachs Disease is extremely rare: there are approximately 200 children in the world that have been diagnosed with Infantile Tay-Sachs Disease.
~ There are clinical trials (experimental drugs/treatments) that may be available. These trials are in Minneapolis (MN), Boston (MA), and Washington D.C. We are working with Olly’s medical team to determine which trials Olly may be a candidate for.

HOW DID WE GET HERE?
~ Olly began missing her developmental “milestones” around 9 months of age (January 2019).
~ We began working with our school district’s Special Education team to help Olly with Physical Therapy and Occupational Therapy. (March 2019- Current)
~ Olly was referred to Neurologists and Geneticists who helped investigate and test Olly for several diseases. (April 2019-October 2019).
~ At an eye appointment, the doctor noticed the Tay-Sachs “cherry red spot” which eventually lead us to an unconfirmed Tay-Sachs diagnosis. (September 2019)
~ Further genetic testing and urine tests confirmed the Tay-Sachs diagnosis (October 2019).

WHAT'S NEXT?
~ One of the top Tay-Sachs experts in the world is right here at the University of Minnesota (Chester Whitley, PhD, MD). He will be overseeing Olly’s treatments and care team.
~ Olly will have a huge care team, many doctor’s appointments, treatments, and hospital stays.
~ Olly will need a G-tube (feeding tube) soon as her ability to swallow continually declines and her needs for medications and specialized diet grows. 
~ Olly will continue with Physical Therapy and Occupational Therapy with the local school district.
~ We are working with Social Workers from the school district, county, and the hospital. Our team of Social Workers are guiding us in getting help with Olly's Medical Care costs, PCAs, and possible Social Security Benefits.
~ Olly has many upcoming appointments with cardiologists,  geneticist, neurologist, nutritionist, swallow study, sleep study, pediatric PM&R, and medical researchers.
~ We have a Disney World vacation in the works for our family over Christmas (please don’t spoil the surprise for Olly’s big sister Mara (5yrs old)). 

HOW CAN I HELP?
~ PRAY!  We are a huge believers in prayer. We believe our God is a God of miracles and he has proven to our family over and over that he is always listening and ready to work in our lives, or through us in another’s life. Prayers are much appreciated over Olly’s health, her care team, her treatments, her infectious smiles and giggles, her big sister Mara,  peace over the decisions we need to make about clinical trials and treatments,  our finances, our jobs, our home, our close family and friends supporting us, and that Gods light would continue to beam through Olly and our family no matter the circumstances and obstacles.

~ GIVE! If you feel called to give or would like to help support us, visit our gofund me page (www.gofundme.com/f/ollybelle (https://www.gofundme.com/f/ollybelle)). Dollars donated will help with medical bills, travel costs for treatments, household bills due to missed work, Disney World trip and other family fun activities.

~SHARE! Let us be a light to each other in a world that is sometimes very dark. Share our story with other friends, family, or a co-worker who may be able to also pray, give, or share.  God is working miracles here in us and through us- please don't hesitate to share with us or the world how Olly's story affected you or someone you know. 
Caring Bridge: www.caringbridge.org/visit/ollybelle (https://www.caringbridge.org/visit/ollybelle)
Go Fund Me: www.gofundme.com/f/ollybelle (https://www.gofundme.com/f/ollybelle)


All our love,
-Nate, Lora, Mara, and Olly Chapman. 

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