11/09/2023
As Shae Ryan approaches his 17th birthday next week, we are reminded of how lucky we are to still have our sweet boy. Not only do we still have him, he has been in medication free REMISSION for several years now!!!
He still has lasting effects from the significant muscle loss he endured, but we know many are not so fortunate. Most never go into remission, and many lose the fight completely. For those that are not aware of his condition, Juvenile myositis is a runaway immune response where the body attacks itself. It is a pernicious disease that can attack multiple organs—muscle, heart, lungs, skin, and joints—and is life-threatening if not treated quickly and aggressively. Currently, there are no FDA-approved treatments and no known cure.
We are grateful for the swift diagnosis and initial treatment he received at Boston Children's Hospital where we took him for a second opinion that no doubt saved his life. We are also grateful for the knowledgeable and aggressive follow up & continued care he receives from Dr. Siamun Singla with Rheum To Grow Tx that again, no doubt has saved his life. Unfortunately, this disease is so extremely rare, that not all facilities and doctors are as knowledgeable as them.
That's why we are teaming up with https://www.curejm.org/ to raise funds for research and to spread awareness of Juvenile Dermatomyositis. In honor of Shae Ryan's birthday, any donation you can make, no matter how large or small will go a long way to helping children battle this life threatening autoimmune condition.
Gifts can be made at: http://events.curejm.org/goto/HopeforShae
or
a check made out to Cure JM can be mailed to Cure JM, P.O. Box 45768, Baltimore, MD 21297 with “Shae” in the memo
or
Scan the QR code below
