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Re: Our Story...
Angela,
I can relate to everything you just wrote. Emma's EF was in the 20s last January, but amazingly she is now in the 40s. She is on Carvedilol, Digoxin, Captopril, Lasix, and so many more. Luckily, we have beat the odds, but sooner or later we are aware that we will be faced with the second transplant.
Please feel free to ask me anything about mito and heart issues. Mito has played a HUGE role in our lives, and I know so many people who might be able to help you out. Our geneticist is amazing and I encourage you to contact him (PM if you want his name and number). I have referred many many kid to him, and he has never turned one down.
I am going to read your story in the morning- Emma is a bit off kilter right now. But please know that there are other moms out there who share your sorrow and struggle. We also share the beautiful stories of children whom have blessed our lives tremendously.
Be Blessed,
Heather
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