My husband and I did a lot of research on Limb-Girdle, and were not convinced that was the correct diagnosis. We convinced his doctor that Limb-Girdle did not explain his many other symptoms of: daily low grade fever; ezcema like rash on eyes, cheeks, hands. and wrists; muscle pain; stiffness and popping of joints; and hard lumps on his jaw. After running additional bloodwork and researching his symptoms, we now suspect that he might have a rare autoimmune disease called, Juvenile dermatomyositis (JDM) http://www.childrenshospital.org/conditions-and-treatments/conditions/juvenile-dermatomyositis.
Due to the rareness of JDM, we have not been able to find a specialist in our area with experience in diagnosing and/or treating the condition. After researching online, we found a specialty hospital in Boston, MA that has an almost 90% remission rate for patients with JDM (On adverage, the remission rate for JDM is 33%).
We have scheduled an initial appointment with Boston Children's Hospital on January 24th. He might have to see a couple of different specialitst (not sure if we can see them all on the same day) in order to get a diagnosis for him. If it is JDM, or another treatable condition we are hoping to begin treatment while we are there.
Initial treatment for JDM would require an inpatient stay. How long he would be inpatient, would depend on how advanced they feel his condition is, and how he responds to treatment(s). Once he is discharged, it is possible we might need to go back to Boston once a month for treatment.
Thank you to everyone that has been praying for our sweet boy. I am starting this Go Fund Me account, as many of you have asked what more you can do to help Shae Ryan and our family. At this time, a friend of the family is offering to cover the one way flight to Boston, MA for Shae Ryan and myself (mom). We intend to use the $9,800 we are requesting to cover: medical deductables, copays, coinsurance, cab fare/uber, food, hotel, flight back home (as Shae Ryan cannot sit long enough for a bus ride) and miscellaneous expenses.
If anyone else would like to donate frequent flyer miles or vouchers, we could definitely put those to good use as well. We will make sure to update everyone on his progress and our needs as we take on this new challenge with him.
With Much Love,
The Rejba Family
Challenges are what make life interesting;
Overcoming them is what makes life meaningful.
- Joshua J. Marine
Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
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