Clara Violet is a sparkly, bubbly, sassy 3 and a half year old living in Grand Forks, ND! Born with Down syndrome... that has proven to be the least of her worries. Clara was also diagnosed with Hirschsprungs disease, respiratory issues, adrenal insufficiency & otherwise unexplained failure-to-thrive. She has spent far more than her fair share of nights sleeping in hospital beds hoping and waiting for her medical teams to solve her very complex medical picture puzzle. As of today, Clara has spent more than 250 nights of her short life inpatient at local and regional hospitals... and continues to stump her doctors, and worry her parents. Her dad Scott works for a national technology company, who has been genuinely & wholeheartedly supportive of her medical needs. While having an understanding employer is wonderful, Scott works in sales- so lost office & client time is directly reflected in his income. Clara's mom, Lana has not been able to work outside the home since her birth. Extensive out of town hospital stays (including two 30+ day stays in the last 6 months) are becoming more and more frequent, and they take a greater and greater toll on the family- both financially & emotionally every time. Clara is the baby of the family, with 3 older siblings Alex (17) James (12) and Stella (5.) They are exceptionally flexible and patient when Clara's needs throw a curve-ball into the family dynamic... whether that be a missing parent, missed activities, and/or doing more with less when it comes to finances.
Even though Clara continues to fight an uphill battle, she remains a source of sunshine and hope for her family & her community. Her strength and resilience is unmatched and her true love for life teaches us all a lesson. Being a ND born-n-raised family, it's hard for the Beaton's to accept, much less ASK for help. Having a medically complex and fragile child has forced them to allow those who love them to help, and has opened doors to amazing relationships and a level of kindness that they didn't even know was possible. For that, they are eternally grateful. XOXO