The 1919 is Supporting DMRF & William K
William’s Dystonia journey did not become obvious until he was four. He started having trouble walking. It appeared some days as a limp and others as a more pronounced change that resembled cerebral palsy. Due to feeding difficulties early in life, William had genetic testing done before he was two. Thanks in large part to our excellent pediatrician, Dr. Jane Sneed and Dr. Veerapandiyan, neurologist at Arkansas Children’s Hospital, we had a diagnosis of KMT2B dystonia within 6 months of his first doctor appointment. Dystonia is a neurological movement disorder that causes excessive, involuntary muscle contractions. These muscle contractions result in abnormal muscle movements and postures, making it difficult for individuals to control their movements. The movements and postures may be painful and proved to be for William. KMT2B type Dystonia is a progressive form. For the next 2 1/2 years William had PT, OT, speech, bracing, and Botox all to help slow the progression and pain. Throughout it all, he has always had the most amazing smile and attitude.
Under the care of Dr. Amy Viehoever and Dr. Sean McEvoy at St. Louis Children’s Hospital, and at a point where William was getting around via walker, rolling chair, or being carried, he was able to undergo surgery for placement of a deep brain stimulator. This operation has been our miracle. William no longer requires a walker or to be carried everywhere. He has been able to stop Botox injections and medicines because he is pain free. Our journey would have been completely different if it had not been for research and the discovery of this type of dystonia in 2016. We are abundantly blessed by the support of our family, friends, and community. Thank you for taking the time to read about William’s journey and your donation.
The DMRF thanks the Jonesboro Country Club and organizers of the 1919 Tournament for their support of William and all those with dystonia.
Donors
Maria Furcron
Frederick Isaacson
Anonymous
Benton Smith
Anonymous
Matthew Hibbs
RYAN YOUNG
Bill Stanley
Gayle Jones
For William, Love, Nana
Zac Hammons
Anonymous
George and Robin Kaloghirou
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