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London, Kentucky
3 years old
August 11, 2021

Avery

Avery was recently diagnosed with Syngap1 in March 2021. Avery is such a joyful little boy. He loves water, flags, umbrellas, playing outside especially being on the swing, and jumping on the trampoline. He is very playful and brings such a great energy to our lives. Once you meet Avery, you fall in love instantly. We first started noticing Avery’s slower development around 10-12 months when he was struggling to stand and he wasn’t able to walk alone till 18 months. Communication also became an issue. He also had a lip tie which led us to believe that was the issue with his communication and feeding problems. He would babble some but very little. We immediately reached out for support and was able to get him in to OT, PT, Speech and feeding therapy. It wasn’t until this year however that we were finally able to get a diagnosis. Most recently, we met with a neurologist team at Cincinnati Children’s Hospital in July to take steps to see if Avery has been having seizures and to find out the next steps. They have scheduled him a EEG for August. We are very hopeful for the future and whats to come for Avery. We know that as of right now there is no possible cure but with our continued  treatment plan of therapies we will only see improvements. The best advice we can give  to newly diagnosed patients and their families is to seek therapy quickly and look for support groups. Having a support system behind you is very important.

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