We all have special passions and causes that are important to us and that we support. Well, this summer, my family embraced a new cause which has had a tremendous impact on both my heart and my life. My great nephew Jonathan (3 years old) was diagnosed with Duchenne Muscular Dystrophy ("Duchenne"). Although the outlook for children with Duchenne is quite challenging, this same outlook is showing rapid improvement. Jonathan's story is below...
Unfortunately, Duchenne is the most common fatal form of muscular dystrophy and causes progressive muscle deterioration throughout the body. Impacting about 1 in every 3,500 boys, Duchenne is often a spontaneous gene mutation in the womb (as in Jonathan's case) which means every newborn boy is at risk. Among the many health complications are loss of mobility (wheelchair-bound in early teens), loss of upper body strength (late teens), and, over time, loss of function of the heart and lungs (teens, twenties, and, increasingly, thirties).
Words can not express how special Jonathan is. Although this disease may try to slowly ravage his body, his mind and his soul will remain strong throughout. There are still so many wonderful things that he will be able to experience and to achieve in life. His entire family is 100% committed to helping him accomplish great things and I am confident he will have a good life, a strong voice, and a powerful impact.
PPMD Leads the Way
Parent Project Muscular Dystrophy (PPMD) is a nonprofit organization formed in 1994 by parents of children with Duchenne who were frustrated with the lack of awareness, funding, and treatment for the disease plaguing their sons. The mission is "To End Duchenne." PPMD is the leader in supporting Duchenne research having funded over $45 million directly for research and facilitated additional funding from various government and private grants. PPMD has helped fund every major Duchenne treatment being researched today including Ataluren, Tadalafil, and Biglycan.
Suffice to say, Duchenne research is not nearly as broadly supported and heavily funded as the research efforts for more well-known diseases. However, we can and will make the difference in helping find a better treatment and, eventually, a cure. It is my new mission in life. The people at PPMD have been a true inspiration to me and a source of renewed hope for Jonathan's prognosis. For those who wish to help my efforts and make a tax deductible donation to support Duchenne research, please click on the red "Donate Now" button (or contact Ryan Fischer at PPMD directly Re: 1 Step 2 End Duchenne). I can assure you that your support will be used efficiently and will make a huge impact on new research.
Thank you all so much for your prayers and support for Jonathan and our family.