Bryce Andon and Baen Allen were born to Brian & Casey Hurst on March 3, 2011, at 8:07 am and 8:08 am respectively. Other than large hernias they were healthy. When they came home, they began to experience loud, labored breathing but the doctors assured Brian and Casey that the twins were fine. At 2 weeks old, they both had surgery to correct their hernias all the while being told that Bryce and Baens breathing will improve, which it didn’t. In addition to their loud, labored breathing, they would also regurgitate majority of each bottle. They both were anesthetized for the second time at 2 months old for a bronchoscopy and a swallow test. That procedure found they suffered from Trachemalacia, Layngomalacia, Collapsible pallet, Enlarged adenoids and Gastroesophageal reflux disease (which when combined with everything else is very dangerous). Their problems continued to escalate and they were referred to a geneticist who not only confirmed they were identical, but also that they suffered from the rare genetic enzyme storage disorder called Hurler Syndrome. Each of Bryce and Baen’s health problems (including the hernia) are symptoms of Hurler Syndrome however the doctor informed their parents that more severe problems will occur. A cardiac test and an eye exam determined that Bryce and Baen had: a dilated ventricle, an enlarged ventricle, a dilated chamber and corneal dystrophy. There is no cure for Hurlers and the prognosis is TERRIBLE. Without treatment the life expectancy is 5-10 years, and the mental age does not exceed 4 years old. A regular bone marrow transplant could extend that by a few years. But thankfully Monday (November 7, 2011), Brian and Casey were put in touch with the University of Minnesota Children’s Hospital. They not only specialize in Hurler Syndrome, but they are the ONLY place in the world that performs a specific type of bone marrow transplant which focuses on the affected part of the brain! Unfortunately Bryce and Baen have begun displaying symptoms that are specific to Hurler’s (course facial features, ear infections, inability to straighten arms entirely, the start of claw hands, very low muscle tone, heart conditions, breathing problems, difficulty swallowing, collapsible palette, weak voice box & wind pipe, distended belly and hernia). In order for this bone marrow transplant to work, they need to get it immediately. Today, 5 days later, they fly to Minneapolis for a week of testing, their first spine treatment and undergo surgery to insert a chest port that will be used for their enzyme replacement therapy. Once they return home, the twins will begin their enzyme treatments at the Cleveland Clinic Main campus. After 8 weeks of treatment, the twins, Brian and Casey along with big brothers Beau and Brady will move to Minneapolis while Bryce and Baen undergo chemotherapy and a bone marrow transplant. The Children’s Hospital will do the transplants 6 weeks apart from the other and providing there haven’t been complications or rejections, the Hurst family will be able to return to their home in Lagrange, Ohio in approximately 4-6 months. Sadly in the future, Bryce and Baen will have to have multiple orthopedic surgeries to repair their bones. On behalf of Casey and Brian, we are accepting donations to assist with all medical & non-medical expenses (co-pays, traveling, food, mortgage payment, etc). If you would like to send a donation, you can on the website www.hurstbrothersbattle.com or please make checks payable to “Hurst Brother’s Battle Against Hurler’s” and in the memo area please reference “Hurst Brothers’ Benefit Memorial Account”. You may send it to:
Fifth Third Bank
30 West Bridge Street
Berea, Ohio 44014
Thank you!
