Chili & Soup Luncheon on 10/21/2012
See the "Fundraiser" page for more details!
Proceeds donated to the Hurst Brothers' Trust
Bryce's Stem Cell Transplant was on 5/14
Good luck on your path to wellness!
Baen's Stem Cell Transplant was on 3/28
He is doing as expected and is in great spirits!
Our start to life:
Bryce and Baen Hurst, identical twins, were born with a very rare genetic enzyme storage disorder called Hurler's Syndrome.
Hurler’s Syndrome is caused by the body's inability to produce specific enzymes. If left untreated, life expectancy does not extend past early childhood. In individuals with Hurler’s, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. This results in a variety of severe health problems starting right after birth.
Thankfully, the University of Minnesota has accepted them into their 6-month clinical trial where they will receive an unusual bone marrow transplant and enzyme replacement therapies. This transplant has changed the lives of many patients- allowing a normal life. This is why Brian & Casey Hurst, Bryce and Baen’s parents, have decided to temporarily move their family of 6 to Minneapolis for the duration of the treatment.
As you can imagine, this will be a tremendous challenge for the Hurst family. That is why we are asking for your support. Donations are being accepted to help cover the medical & non-medical travel costs associated with the twin’s care. This site was created to make the donation process simple for family, friends, and any others who wish to donate to this cause.