Help Faith Heard be Triumphant
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Faith is a beautiful miracle girl who was born at 27 weeks weighting only 1lb11oz. Faith is such a strong little fighter that defeated the odds in her 3.5 months NICU stay and even after discharge.
After many bumps on the road she was finally stabilizing and meeting all her milestones. That was until September 27th, 2017 when at 28 months old, we got the devastating news that our beautiful little fighter had to jump back in the ring to fight her second battle, this time against Hurler Syndrome the most severe form of MPS1 (mucopolysaccharidosis).
Hurler is a very rare genetic disorder, roughly only 2000 registered cases in the entire world and it's a fatal condition. When treatment and bone marrow transplant are not given immediately after diagnosis or not given at all, kids won't live very long. Though this treatment, which is called ERT (enzyme replacement treatment) and bone marrow transplant are not a cure, it will help prolong Faith’s life.
Since Hurler is so rare and Miami children's Hospital has never done a bone marrow transplant for Hurler syndrome, we have decided to do everything we can to take our little miracle to university of Minnesota children's hospital which is one of only 2 hospitals in the US who officially Specialize in this condition.
We know God will be once again right there next to her fighting the battle for her. For the battle is not ours but God’s (2 Chronicles 20:15)
All donations are going to be dispersed to Linda Heard, Faith's mom.
After many bumps on the road she was finally stabilizing and meeting all her milestones. That was until September 27th, 2017 when at 28 months old, we got the devastating news that our beautiful little fighter had to jump back in the ring to fight her second battle, this time against Hurler Syndrome the most severe form of MPS1 (mucopolysaccharidosis).
Hurler is a very rare genetic disorder, roughly only 2000 registered cases in the entire world and it's a fatal condition. When treatment and bone marrow transplant are not given immediately after diagnosis or not given at all, kids won't live very long. Though this treatment, which is called ERT (enzyme replacement treatment) and bone marrow transplant are not a cure, it will help prolong Faith’s life.
Since Hurler is so rare and Miami children's Hospital has never done a bone marrow transplant for Hurler syndrome, we have decided to do everything we can to take our little miracle to university of Minnesota children's hospital which is one of only 2 hospitals in the US who officially Specialize in this condition.
We know God will be once again right there next to her fighting the battle for her. For the battle is not ours but God’s (2 Chronicles 20:15)
All donations are going to be dispersed to Linda Heard, Faith's mom.
Organisator en begunstigde
Randy Maale
Organisator
Palm Beach Gardens, FL
Linda Stephany Heard
Begunstigde
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