DALLAS, Feb. 05, 2024 (GLOBE NEWSWIRE) -- Sufyan Pashai, a 4-month-old from Dallas, will travel to Minnesota and become the fifth child to receive life-saving gene therapy treatment on U.S. soil for metachromatic leukodystrophy (MLD), a fatal and rare genetic disease. This announcement follows a contentious effort and emotional appeal from the Pashai family to receive insurance approval and coverage of the revolutionary treatment known as Libmeldy. Thanks to Texas Medicaid, the Firefly Fund and Parkland Community Health Plan, the cost of Sufyan’s treatment and stay at the Minnesota Masonic Children’s Hospital will be covered.
Sufyan was diagnosed with MLD in October 2023 after doctors found that his older brother, Mohammed, also carried the rare disease. Mohammed received his diagnosis at two-and-a-half years old after displaying developmental delays, including the loss of cognitive and physical abilities. MLD is a recessive genetic disorder that causes a breakdown of the myelin sheath, and most children with the disease die by the age of 5-years-old. MLD treatment is only available before symptom onset, so while Mohammed’s condition has progressed beyond treatment, there is still hope for Sufyan.
“We are thrilled with the decision by Texas Medicaid to cover Sufyan’s hospital stay,” said Maria Kefalas, MLD advocate and founder of Cure MLD and The Calliope Joy Foundation. “Every child deserves a chance at life. This decision marks a significant step forward for the MLD community, signaling hope that every child battling MLD can have a chance at a healthier and brighter future.”
The 24-year-old father of the two boys served with American troops in his homeland of Afghanistan before immigrating to America in 2021 for the family’s safety as part of Operation Allies Welcome. Since settling in Dallas, the family has had to adjust to life in America while navigating the challenges of caring for two children with this disease. The family is still facing an immense financial burden as they prepare to travel to Minnesota, and The Calliope Joy Foundation has been working to bring the MLD community together to fundraise for the family and spread awareness of their story. The decision by Texas Medicaid opens the door for Sufyan to receive the critical treatment he needs, offering renewed hope to the Pashai family. They extend their heartfelt gratitude to everyone who rallied behind them during this challenging time. The unwavering support and solidarity of the MLD community have been instrumental in securing this life-saving opportunity for Sufyan.
About The Calliope Joy Foundation:
The Calliope Joy Foundation is a 501(c)(3) charitable organization dedicated to raising awareness about metachromatic leukodystrophy, supporting affected families and advancing research toward a cure. It was founded in honor of Calliope Joy Kefalas-Carr, who inspired a global movement to raise awareness of and funding for rare diseases.
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