Weston Groff is now 13 years old! As previously mentioned Weston has Cerebral Palsy, Cerebellar Ataxia and Hypertrophic Cardiomyopathy of the left ventricle along with a number of other medical conditions.
His mom and dad (Sandy and Jeremy) have spent tens of thousands of dollars and countless hours at hospitals including Children's, The Mayo Clinic and Shriners searching for an answer as to the cause of these conditions. All signs pointed in a direction that they feared and after genetic testing in Kansas City, the fears were confirmed. Weston has a genetic condition called Friedreich's Ataxia .
While the progression and prognosis of FA varies with the symptoms and some people manage to sustain a quality of life that could be considered "good", Weston's case doesn't look great. The complications of the Hypertrophic Cardiomyopathy (thickening of the walls of the heart) and the progression of the Cerebral Palsy and Cerebellar Ataxia make most standard treatments ineffective. For lack of a better explanation, his case is considered terminal and the best that the family can hope for is to delay progression.
Since this page was first put up, a lot has happened. Weston was added to the Make a Wish list and went on a Make a Wish trip with the family to Disney World in Florida. The Groff Family moved from Kansas City to Dallas Texas to help establish additional care at Children's Hospital of Dallas. Sandy and Jeremy have both started new jobs in Dallas but financially speaking, things are tight. As Weston has been losing weight, a GI feeding tube was put in back in December, 2018. The good news is that he is gaining some weight now. The bad news is that a large part of that bill was not covered under insurance. Weston's coordination while attempting to walk is also getting worse. As medical supplies are expensive, Sandy has looked into Medicaid for Weston to help cover costs not picked up by insurance but the Medicaid wait in Texas is 10-12 years! The paperwork for different waivers has been filed and declined 3 times so far. Essentially, if he isn't in a hospital or in longer term hospice care, Medicaid will not be granted because he is under the age of 18.
You can read current status updates and see more pictures on Sandy's Blog over at CaringBridge.com
So.. what can you do?
Pretty much anything is helpful in terms of donations. The treatment and care will continue with significant cost to the family even after insurance and with no assistance from Medicare, money is extremely tight.
If you find it in your heart to provide assistance, please consider donating and help support Weston during this time.
- Danielle Darlington
- Jordan Hopkin
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