As most of you know our son Boston was diagnosed with AADC (Aromatic Amino Acid Decarboxylase) deficiency on May 5th, 2017. There has only been 131 cases ever diagnosed with this disease in the entire world. 

Here's Boston's story... Boston was born at 33 weeks and weighed only 3lbs 6 oz. He stayed in the NICU for 47 LONG days until we were finally able to bring him home on September 2nd, 2016. For 2 months, everything was perfect until 2 weeks before Thanksgiving. Boston got very sick and remained sick for about 4 months. On January 13th, 2017 Boston stopped breathing for 3 minutes and by the Grace of God, the doctors and nurses were able to revive him. From that moment they began running many tests on him because they knew something just wasn't right. Boston couldn't/still can't sit up, hold his head up well, roll over, reach and grasp items, etc. Everyone was leaning towards Cerebral Palsy (a very common misdiagnosis of AADC) but when we met with our neurologist, he just knew it was something metabolic. He told us that we had to take Boston to have a lumbar puncture done to rule out different things. About a month after he had the lumbar puncture, the neurologist called and said that they had received confirmation that he had AADC deficiency. At that moment, our lives changed forever.  Boston is now 10 months old and his favorite things are his mama and daddy, along with his amazing family, the song "Ice Ice Baby" by Vanilla Ice, watching sports/Cops on TV (I guess because all of the commotion going on lol), and watching people make goofy faces. Boston is the light of our lives and we are blessed that God chose us to be this beautiful child's parents! 

This week (May 22-28) please support our precious Boston and the AADC Research Foundation by wearing blue and donating whatever you can to this link, every penny counts! We need to bring awareness to this rare brain disease so that Boston and others diagnosed with AADC can get the proper care and treatment that they so desperately need! You can google AADC deficiency to learn more about this rare brain disease! Thank you in advance!!!

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