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Roanoke, Virginia
3.5 years old
March 17, 2022

Brie

Brie is 3.5 years old and we live in Roanoke, Virginia. She was a fat and happy baby. She was diagnosed with hypotonia at 9 months. She couldn’t sit up unassisted or crawl at that time. At 2 years old she was diagnosed with autism. She had just started walking and was nonverbal (which she still is). The day after Christmas 2021 she was diagnosed with epilepsy. She started having drop seizures shortly after learning to walk at 2. They became more and more frequent over the next year.  A couple weeks later we got the Syngap1 diagnosis. It was honestly a relief to me. I’d been googling what could be wrong with my baby and was crying constantly, worrying she would die from brain tumors. I still cry sometimes but I have so much more peace since having her diagnosis.

We have been on a strict keto diet and using cbd oils since New Years and she has improved so much, it’s miraculous. We have also been praying and having everyone we know pray for her. Her seizures have stopped about 90% and she has become much more steady while walking. It was heartbreaking to watch her fall all the time before we started this treatment. We are so grateful! She has been doing pt, OT and speech therapy on and off for a couple years. She sometimes wakes up screaming from naps. God is good and merciful because since giving birth to her little sister in December 2021, she has been sleeping 12 hours every night. Before that she was up screaming all night. She has bouts of constipation and angry fits when her 1 year old sister takes her iPad from her. She will only bite herself and my husband. She is otherwise so gentle and sweet with all of her siblings.

She is totally obsessed with music. God knew we needed each other because her dada and mama are musicians. We could all jam nonstop for hours. She loves to swim in the pool and play in water. She loves the swing and slide. Her favorite is Bible songs and Elmo. She just started signing “more”. Which is the biggest blessing. God has blessed us and we have all grown so much since Brie came into our hearts.

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