Kate from Char Bear Keeps Dancing shares her daughter’s epilepsy journey

     

Kate from Char Bear Keeps Dancing shares her daughter’s epilepsy journey. In August 2022, after being reassured by their paediatrician, Charlotte’s concerning movements were shown to a paediatric neurologist who suspected infantile spasms, a rare form of epilepsy.

“It was devastating, confusing and very scary. Spasms are not like other seizures, or at least not what mainstream tv and media depicts. Charlotte’s spasms were subtle and easy to misdiagnose as other ‘funny baby/kid movements'.”

“We’re very fortunate that after failing previous medications, we’ve found success with one. We hope that along with balanced meals, proper sleep, extra time and support for certain activities, she continues to stay healthy.”

Noticing a lack of child-friendly books on infantile spasms, Kate partnered with 2 of Charlotte’s neurologists to create Char Bear Keeps Dancing. A gorgeous, illustrated book of a dancing bear’s epilepsy journey.

“Working together, we made sure the information was medically accurate and can be used to help families at time of diagnosis as there are so few resources available. None of which are easily understandable or digestible for children.”

Unfortunately, it’s very common for children with epilepsy to experience speech delays or be nonverbal, which is something Charlotte is continuously working on.

“A year ago, she was still not talking beyond a few words. She was grumpy and tired from the steroids, and I was worried we would never get “her” back. Over time, her speech has taken off and it has been magical to witness. Charlotte worked hard with her teachers, speech therapists and family and continues to work 10x harder than her peers to make half the advancement.”

“Initially, I worried “will she be normal”? But what is normal? Who even IS “normal”? Our epilepsy journey has opened my eyes to so much more. Understanding how Charlotte’s brain works absolutely fascinates me, from what works for her to how she learns best. I’ve learned to follow her lead and not be so worried about when she hits each milestone. I want Charlotte to be happy. I want her to have friends, enjoy school, learn, grow and have a full life, whatever makes her happy.”

Massive thank you to Kate and Charlotte for sharing their story with us.