May 17th, 2013 was the day that young Riley William Heasley was diagnosed with PKAN, an extremely rare neurodegenerative disorder caused by excessive iron build up in the brain. It was also the day that his family was forced to come to grips with the many challenges associated with the battle to save their son. A disease that affects less than 200,000 people in the United States brings about its own unique challenges as well. Where can Riley get the care he needs? How can a single mother provide the proper care, and still work?
This is where Martyred Angels Foundation entered the picture. As CEO John Vogels recently told the family, “no one should have to go through something like this alone.” Having lost his young son Bladyn to a tragic drowning, Vogels knows the importance of helping others through difficult times. Please help support the Heasley family in their time of need. Donations will directly support the expenses associated with traveling to Oakland, California as part of the new 18 month FDA study of this rare disease. Martyred Angels Foundation is also seeking a cure for this horribly debilitating disease. Please help this family get through this battle for survival.
For more information visit: www.martyredangelsfoundation.org
For more on PKAN visit: http://rarediseases.org/rare-diseases/pantothenate-kinase-associated-neurodegeneration/