Faith Heard, 2 years old, is a beautiful miracle born at 27 weeks weighing just 770gm. After her 3.5 months of hospital stay due to her prematurity she was doing fairly well until September 29th when she got diagnosed with Hurler syndrome.
Faith was born in Nashville, TN at 27 weeks and weighing only 770gm. She was in the Nicu for 3.5 months and got discharge with home oxygen. Later on she was diagnosed with epilepsy and mild Cerebral palsy. After seeing so much improvement and not needing oxygen anymore, we decided to move to Florida on February 2017. Everything was going so smoothly in florida with her health and her development that we thought she was gonna be discharge of all her specialists soon. It wasn’t until September 29th that we got the devastating news that our beautiful miracle was gonna need more than some specialists office visits, our precious daughter was diagnosed with MPS1. Since time was not on her side due to her age, we decided to move to Minnesota to get her treated as soon as possible. We had to get rid off most of our stuff and pack in less than a week what our life had been in florida for the past 8 months.
Once in Minnesota we found out our daughter’s gene mutations were rare and not much information about them, this being said we don’t know what the future will be for our daughter and what complication she may or may not have.
We hope that soon we can get a cure for this devastating disease.
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
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