0
London, England
3 years old
September 23, 2020

Bear

Bear is almost 4 years old, and was diagnosed with SYNGAP1 in February 2020. He starting missing milestones around 2 years of age (mainly speech), and, in September 2019, he was diagnosed with severe epilepsy.

Right now, we have seizure control - through a combination of Epilim and Keppra. However, as Bear’s behaviour has worsened over the last six months (biting/pinching/kicking), we are considering adjusting his meds. He uses 2-3 word sentences, and his language is, predominantly, functional, but he is starting to develop emotional language. Bear has speech therapy once a week, and he slowly continues to improve.

Bear is the most positive, happy child, and he absolutely adores his brothers (ages 6 and 17 months). He struggles with fine motor skills and general coordination, but that never stops him from climbing, sliding, swinging, jumping and just generally taking risks. His high pain threshold is a blessing, in this regard!

Bear, like a typical Syngapian, loves being in water, riding horses and watching an iPad. He is extremely willful, and a runner, which can be challenging. His sleep is poor, and he often wakes at night. Appetite-wise, he will either eat a lot or nothing at all.

We love Bear to pieces, and he is adored by all who know him. With his beautiful smile, and a mischievous twinkle in his eyes, he has all our family and friends wrapped around his little finger! We will continue to fight for him, and all our Syngapians, so that they can lead the fullest of lives.”

-Mom

We Need Your Help

We can use your help to raise awareness about SynGAP1.

© Copyright  2018-2021 Syngap Research Fund  | All Rights Reserved | 
Privacy Policy
RegistryNewsletter
0