By: Autumn Klein
FAYETTEVILLE, Ark. (UATV) – Homocystinuria is an extremely rare disorder that affects less than 0.01% of the world; however, a member of the Northwest Arkansas community has directly seen the impacts of HCU his entire life.
Homocystinuria, also known as HCU, is a genetic disorder in which the body cannot properly process amino acids. There are many different forms of HCU with different signs, symptoms and genetic causes, according to information provided by MedlinePlus.
Fifteen-year-old Carson Hunt was the 28th person in the world to ever be diagnosed with a rare form of HCU. Hunt’s specific condition is known as Cobalamin G, and Hunt is one of only 50 people ever in the world to have this type of case. When Hunt was just three months old, doctors told his family that he would only have six months to live. Because of how rare his condition is, and the odds he has defied, Carson Hunt has become known as a “genetic celebrity.” He has struggled with HCU his entire life, with symptoms including partial blindness and developmental delays.
Because of the rareness of the disorder, funding research for it is a problem. The research team for Homocystinuria Cobalamin G. recently had to apply for a grant from the National Institute of Health to continue research on the disorder; however, the team needed additional funding to make this happen. During the month of September, Hunt made it a goal to raise $10,000 to put towards this cause with the help of his brother.
Carson Hunt happens to be the younger brother of University of Arkansas sophomore, Ethan Hunt. Ethan Hunt is a member of the University’s interfraternity chapter, Sigma Phi Epsilon, and has used this platform to bring awareness to his brother’s condition.
In September, Carson Hunt took it upon himself to bike 100 miles in support of the research, while his brother, Ethan, ran a marathon to raise funds. The Sigma Phi Epsilon fraternity organization dedicated the month to helping the two brothers, and was able to contribute over $1,000 to their fundraising. The chapter also put all philanthropic fundraising in the month of September towards the cause.
Ethan Hunt says that despite Carson’s struggles, he has never let that stop him from doing the things he loves.
The Hunt family says their goal is to raise awareness for people suffering from rare diseases.
For those interested in supporting the research towards Carson’s condition, the donation link can be accessed here.