Bryce Andon and Baen Allen were born to Brian & Casey Hurst on March 3rd, 2011. Other than large hernias they were healthy. When they came home, they began to experience loud, labored breathing. At 2 weeks old, they both had surgery to correct their hernias all the while being told that Bryce and Baens breathing will improve, unfortunately it did not.
Their problems continued to escalate and they were referred to a geneticist who 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 without treatment the life expectancy can be short. A regular bone marrow transplant could extend and improve their life.
Thankfully, on 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 including; 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. In November they made a trip to Minneapolis for a week of testing, their first spine treatment and to undergo surgery to insert a chest port that will be used for their enzyme replacement therapy. Big brothers, Beau and Brady, were tested to see if they can be the bone marrow donors, as they will most likely provide the closest genetic match. After 8 weeks of Enzyme replacement 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.