Matthew Long

Meet Matthew. Matthew was born on May 29, 2013 with a rare condition called ornithine transcarbamylase deficiency (OTC deficiency.) The disorder is one of a group of disorders called urea cycle disorders, and this particular disorder occurs in approximately 1 out of every 800,000 births.

Matthew’s is a more severe manifestation than most, a type that shows up in only about 1 out of every 10 OTC children, and almost always results in death within a few days of birth.

After spending the first 34 days of his life in the local children’s hospital, including three rounds of hemodialisys, 72 hours of prismadialisys, various blood transfusions, and dozens of medications, Matthew stabilized and was sent home to be with his mother, father and two sisters.

The only way to treat this condition in the long-term is with a liver transplant. Medications and special diet have Matthew in a state of relative stability, but it is not sustainable, and he is extremely susceptible to infections. As you can imagine, this is an expensive endeavor. For that reason, we are raising money to pay for uninsured medical expenses associated with transplantation.

Matthew’s family has chosen to fundraise with HelpHOPELive in part because HelpHOPELive assures fiscal accountability of funds raised and tax deductibility for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. For more information, please contact HelpHOPELive at 800.642.8399.

Thanks for your support!