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Matthew is a young man with Moebius Syndrome living in New York. This story was written by his mother.

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His Story

We met Matthew when he was just 4 mo. old. He was in foster care waiting for his forever family. The prognosis from the adoption agency was a baby born with no developed brain cortex, no fingers, only heels for feet, predicting he would never reach any milestones and we needed to be prepared to care for his every need as long as he lived. The first time I held Matt he seemed to be surrounded by a glowing white light and my instincts told me that prognosis could not be correct, we fell completely in love.

The second night Matt was home he rolled over. Celebration filled the air! Our oldest daughter, Maria, correctly diagnosed Matt with Moebius Syndrome by searching on the computer. The genetisist comfirmed her diagnosis.

Matthew is six yrs. old now. He is in an inclusion first grade classroom. Creating the appropriate educational plan for Matt is an ongoing uphill climb. Most often while all the “professionals” are discussing the best way to teach Matt, he leads the way and shows them how he has problem solved on his own and joyfully moves on to his next challenge.

Matthew wakes up each day filled with a contagious zest for life. He talks non-stop and has an impressive love of singing and dancing. He says he is going to marry me when he grows up and kisses my hand like Prince Charming. I treasure this time, also having grown sons, I know it is a wonderful time that passes too quickly.

I think this conversation Matthew initiated with me paints the best picture of who he is. That even though he may look so unique, his heart, mind and soul have a depth far beyond his six years. One day he climbed onto my bed and sat beside me, looked at me and said, “Mom, when you picked me out at the baby store, how did you know I would grow in your heart, and you would grow in mine?”

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