We were not pursuing adoption… at all. We were so, very happy with the life we already have! And we only just adopted our littlest last year!
But God began to stir our unexpecting hearts when a friend found her on a China Advocacy Site. As she researched Poppy’s diagnosis, she recognized the connection to our son’s. Slowly God showed us how little faith we were displaying… and that God could do this… even if she was in China! We prayerfully decided to take a step… and then another… and God just kept letting us through the doors!
MPS disorders occur when there is a missing enzyme that breaks down cellular waste. That waste gathers in all the systems in their bodies, and as it accumulates, it starts to impede their function. As the child gets older, the symptoms only get worse.
Sly Syndrome has an enzyme replacement in trial right now that we are hopeful Poppy Mae will be able to benefit from soon. In China, she would have no such chance, as the medicine, even once it is approved, will be very expensive. This enzyme replacement will not cure her, but it should help to slow down the progression of the disease on her little body.
Because of our 5 year old’s involvement in the clinical trial, we have gotten to know some of the best of the best doctors who treat this disease. They have seen Poppy Mae’s file, are open and available, and are very excited to meet our little girl, too!
Because we are kind of doing all of this backwards, we are compiling our dossier at the same time that we are completing our home study. We are trusting that God will provide every penny for her adoption quickly so that we can bring her home SOON!!!From bilateral club feet, tendon release, heart surgery, and scoliosis surgery, casting, and bracing, our little flower has had it rough in her short 3 years. But these are the kinds of things we expect with MPS. MPS VII, or Sly Syndrome, is extremely rare, even among the MPS disorders. We’ve been part of that world for about 5 years, since we adopted our son who has a different form of MPS.
http://reecesrainbow.org/wp-content/uploads/poppymae.jpg492735Michellehttp://reecesrainbow.org/wp-content/uploads/officialrrlogo350web.pngMichelle2016-05-20 09:48:482016-11-16 12:16:28POPPY MAE for the Roman family -- IN