Our team is growing!
December 23, 2017
The caregivers of Max and Toby MacDonald Mingo have created this funsraisder to raise awareness about Hunter Syndrome.
"Hunter Syndrome is a rare genetic disease that is progressively debilitating, life-limiting and without a cure. It occurs almost exclusively in males and currently affects approximately 500 boys in the U.S. and less than 2,000 worldwide. Though the disease is present at birth, symptoms become more apparent as the accumulation of GAGs builds within the body, triggering a diagnosis usually between 2 to 4 years old. Most boys with Hunter Syndrome continue to develop physically and cognitively until between the ages 2 and 5 and then begin regressing. These boys gradually lose the ability to talk, walk and eat. Most do not live to see their teen years. Approximately 20% of those affected by Hunter Syndrome do not suffer cognitive impairments or regression and may have normal intelligence but a continuum of physical symptoms." Project Alive is a non-profit organization working to raise funds for a Gene Therapy that could save the lives of boys with Hunter Syndrome. "Gene therapy is a revolutionary approach to treating genetic diseases. It involves a one-time delivery of a normal copy of the defective gene which ideally causes the body to naturally produce the missing enzyme. It is the most promising ‘cure’ that these boys desperately need." Shortly after their diagnosis, Max and Toby began losing their phsycial and cognitive functioning. I watched helplessly for years as both boys lost their ability to talk, play, walk, eat, drink ,and interact with the ones they love. Toby gained his angel wings in May 2015 at 10 years old, and Max gained his in November 2017 at 15 years.
Working with Max and Toby taught us more about life than we'd ever learn in a textbook. They showed us the meaning of unconditional love and how to live every day like it's your last. We are truly greatful for our time spent with them. We am running the 2018 Dick's Sporting Goods Pittburgh Marathon, Half Marathon, and Marathon Relay to raise Money for Project Alive, to help other boys with their fights with MPS2/Hunter Syndrome.