My sister and brother in law recently received some very difficult news. Both of their sons, my nephews, Cadence & Asher, were diagnosed with Hunter Syndrome (MPS2). The gravity of this particular situation is so sacred and personal that I worry any attempt to speak about it seems wrong. Emotions so deep seem too difficult for me to articulate. I fear that nothing I could say would do my heart, or the hearts of my family members, justice. Words just simply do not supply enough of a medium. If I could sing it, dance it, paint it and scream it from a mountaintop that still wouldn’t seem like enough. But I want to try, for them. I want to speak out on behalf of my nephews, my sister and my brother in law. I want to advocate for my family and all the families confronted by this syndrome. I want everyone to know about this because it’s our only chance to make some kind of difference for these beautiful and rare children affected by Hunter Syndrome.
Therefore, this blog is dedicated to our incredible Little Iron Men, Cadence and Asher Adams, and all the families affected by this life threatening disorder. Our blog covers the good, the bad and the ugly days in the life of this particular family living with Hunter Syndrome (MPS2), beginning at diagnosis up until present day. Our mission is to spread awareness about this syndrome in the hopes that more effective and life improving treatments will become available.
At diagnosis, in February 2015, Cadence had just turned 3 and Asher was a year and a half old. These two bright and spirited boys have won the hearts of their families and friends and we know they will win yours too!
As a team, we hope to include links to Hunter Syndrome (MPS2) description, studies, treatment, trials, fundraisers, social media campaigns and posts from our family members wherever possible. Please help us by learning about this syndrome and spreading the word. Please share our links, fundraisers, campaigns and social media information as often as possible.
This is such a rare disease that only a few hundred people in the United States have it. In fact, only a couple thousand people in the world have Hunter Syndrome (MPS2), so there are not very many medical professionals who know enough about it and the existing treatment only does so much. If you know of a trial or study that you don’t see here, please tell us by emailing: email@example.com Whenever possible please do what ever you can to promote new research and treatment regarding this disease. If you can help financially, please see the Give Forward and Go Fund Me as well as other fundraising links on this site. Any little bit helps, as the cost involved with treatment of MPS2 is astronomical, even with medical insurance.
Thank you for your support.
Jen Principato, Lori Adams’ sister and Cadence & Asher’s auntie.