English
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Alabama, USA
6 years old
June 8, 2022

Rochon

Rochon was diagnosed with Syngap1 in 2018. The first 9 months of his life were nothing short of perfect. Rochon laughed, smiled, ate well, and even slept throughout the night, but after not hitting his first couple of milestones we figured something may have been wrong. We brushed it off because everyone said, "No worries, some children are just behind others”. One day, we noticed an eye flutter which led to them happening more frequently. With Rochon being our first child we didn’t know where to start. After countless doctor visits, no one could really tell us much. To make a long story short, Rochon was diagnosed with Absent Seizures and began the “testing” of medications to see which one worked best. We’ve managed to get his seizures down from 100+ a day to less than five. It was a huge blessing to find Dr. Jimmy Holder, right in the same city that we had previously lived in.

Rochon is funny, loves water, coloring, music and dancing, enjoys being outdoors, and is probably Blippi’s number one fan. Everyone loves him, and we often receive compliments about how sweet he is. Rochon’s biggest challenges, are that he is still non-verbal, but he does have a high screamed pitch that would put Whitney Houston to shame. When it comes to sleep, some nights are longer than others. He also has moments where he can become really aggressive due to a lack of sleep, frustration, and so on.I wish that we could say that raising a child with Syngap1 is easy, but we all know the challenges. Despite the lack of sleep, seizures, and mood swings, Rochon has brought so much joy to our lives. Because of him, our relationship with God continues to grow stronger and stronger each day. We appreciate all of our children even more now, because when you have a child with special needs, your level of patience increases a lot, which gives you room to extend grace to your other children. When he has “good” days, those are the greatest moments ever and it gives us hope that one day he will be healed and we will find a cure for Syngap1.One day I had a dream that he was about  7 or 8 years old, and he was talking! That same day I got a call from my Mother (who lives in Texas) and she had the same dream. Even My wife continues to have these dreams too!

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