Update on Faith’s Progress!
As we move forward with transplant we ask to our prayer warriors to please PLEASE pray for a perfect match either cord blood donor or a bone marrow donor since Faith’s mutations are so rare (never seen before) and her case so unique, it is a concern the search of perfect match would be a little difficult. With a perfect match more chance of Faith’s transplant to engraft and less chance of mortality.
We are so thankful for each one of you, for your prayers, for your messages, your support and your donations. Without God’s help and you guys we would’ve not made it to were we are right now and definitely it would have been way harder than already is.
We love you and Thank you all!
October 13th from5-7pm we are going to make memories for Faith. Join us in celebrating her!
We are working hard with our partners to make this an unforgettable night for Faith. This is a celebration for her, about her and to her. Come out and join us, the event is open to everyone! Admission is $14 for all. All proceeds go to Faith’s family. If you cannot make it, please click below to donate to Faith’s GoFundMe page. The family is in need of our help! Let’s be a Triumphant Family and show them how much we care! Read Faith’s story below.
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)