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| Sweet sisters Elle and Ann Carlyle snuggling after school |
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| I love this picture of Ann Carlyle - grabbed a box and wanted to make a rocket ship - she is so creative :) |
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| Another sweet snuggle moment between Elle and Ann Carlyle |
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| Our amazing Dr. Emily at Nationwide Children's Hospital in Columbus, OH |
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| Elle, Frazer and Milla |
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| Sister love with Ann Carlyle and Milla |
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| Elle |
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| Ready to infuse! |
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| On our way to Ohio! |
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| A couple of weeks ago, I got to get away to the mountains with 2 of my besties |
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| Infusion time |
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| Ann Carlyle, Elle, me and Frazer enjoying our fire |
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| Elle and Ann Carlyle |
Dana - Bless you! I like in Little Rock and know Tim and Lea and have been following your posts as much as I can. This makes me think of what my husband went through as a child. He also has a very rare enzyme disorder, Gaucher's Disease, and a treatment was found through NIH trials. Only through funding from the Orphan Drug Bill did the treatment finally make its way to him. The treatments he used to get by infusions with a needle are now in the form of a pill twice a day - truly, truly amazing. When I think of what Elle is going through in the trial, I can't help but hold out hope that the the doctors will get there. It was because of a child in a drug trial that the treatment for what my husband has was fast-tracked by the FDA. Amazingly, he knew this child from church and saw the progress the infusions were making. The infusions are awful for her, I know. Up until only a few years ago did those stop for my husband and he is 52. Medicine is getting better at treating enzyme disorders and I truly believe that one day, we will be able to replace a defective gene or correct it with gene therapy. It is possible.
ReplyDeletePlease know that we are praying in the hope that the trial will lead to a life-saving treatment soon.
Best,
Marty Trieschmann
There are no words. Just love and prayers.
ReplyDelete