IUFLA Posted January 21, 2020 Report Share Posted January 21, 2020 Prayers for Ayden...always the first on my list! Prayers for the rest of your family too...hang in there... Link to comment Share on other sites More sharing options...
Billingsley99 Posted January 23, 2020 Author Report Share Posted January 23, 2020 We met with the specialist that sees patients with Schwachman-Diamond Syndrome. I have always tried to be a my.cup runneth over type when looking at things and my wife well she is a Mom. Lots to take in but it boils down to that Ayden will have lots of struggles that most wont. Possible things he could face are. Liver disease, pancreas issues, bone marrow transplant, auto immune infections, Leukemia, bone abnormalities and other blood related diseases. Ayden was upset about the short stature that is associated with this disease. Being the smallest in his grade really bothers him. We tell him it's no big deal but to him it is. Positive take away this should not impact his life on a daily basis. Should not impact length of his life, maybe down the road quality of.life. the biggest take away for me is that my Angel, my hero my world is here today and I get to look at him every day for inspiration. God has surely blessed us with that amazing little boy. SDS like his mito disease is a spectrum disorder. There are no predictors or indicators what we can expect. With that said I expect God to continue working those Miracles in Aydens life. Thank you all for the prayers for Ayden we love and appreciate HSN Link to comment Share on other sites More sharing options...
rico Posted January 23, 2020 Report Share Posted January 23, 2020 God Bless. Prayers sent. Link to comment Share on other sites More sharing options...
hoosierfan615 Posted January 24, 2020 Report Share Posted January 24, 2020 Continuing to pray!! I believe that attitude counts for a lot and both you and Ayden have great attitudes!! Link to comment Share on other sites More sharing options...
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