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Georgia, USA

Caden was born at 34 weeks, day 1 and spent his first 17 days in the NICU. After coming home from the hospital, Caden experienced blue spells, a heart murmur and general overall weakness. He had a lot of feeding complications and was diagnosed with reflux. At 6 months old, he began physical therapy, speech therapy and occupational therapy due to his overall delay (in gross motor skills, fine motor skills and his oral weakness). On his first birthday, he could only roll from front to back. He learned to sit independently at 18 months old and crawled around 20 months old. He took his first steps at 21 months old and mastered walking shortly after his 2nd birthday. He mastered stair climbing around the age of 4.

At the age of 3, his greatest hurdle was being able to function in group settings such as pre-school classes or church childcare. Behavior was quite difficult for him during this time.

The start of kindergarten revealed his need for a small, self-contained classroom setting with a lot of one-on-one instruction time. Caden requires a lot of repetition to master skills. He loves math and he is right around grade level for that, but he is still a bit behind in most other areas.

Caden has been to see cardiologists, pulmonologist, hematologist, neurologist, developmental pediatrician, geneticist, ophthalmologist, ENT and endocrinologist.  After all this, Caden received his diagnosis with DeSanto-Shinawi Syndrome in 2016 through whole exome sequence testing.

Caden is now 10 years old and is very happy and friendly. He never meets a stranger and has a smile that lights up the room. He is passionate about life and has a great love for his family and those around him. He is kind and generous. He loves playing with his sisters, racing anyone who is up for the challenge on Mario Kart, creating things out of clay or playdough, playing drums, swimming and singing or dancing. He deals with a lot of daily struggles and added healthcare visits due to DeSanto-Shinawi syndrome, but he doesn’t let that knock him down. Our great hope is that a treatment will be discovered during his lifetime that can help him live life to the absolute fullest! 

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