A Malta family has started a candlemaking business to raise awareness as their young girl battles a rare genetic disorder.
A little girl from Malta is battling a rare genetic disorder that was only discovered 20 years ago.
Rian McCann started having twitching movements when she was eight months old.
Her mother Danielle, took her to the doctor, who referred her to a local neurologist. She had a 6-minute seizure that weekend. That began a pattern of tests and waiting to figure out what was the problem.
Rian was diagnosed with CDKL5, a rare genetic condition only discovered in 2004. It impacts the brain, causing seizures, feeding issues, visual impairment, and developmental delays. One in 40 to 60,000 are born with it and 90% of those who are diagnosed are girls.
Danielle describes Rian as a sassy 7 year old.
Danielle, a former art teacher, has started a candle-making business to channel her creative energy.
The business has grown, which gives Danielle and her family more of an opportunity to talk about Ryan and to share her story.
“She just gives the best hugs and she just, she gives you a hug and it’s like she’s really holding on and squeezing you so hard to say, I love you so much,,” Danielle said.
A portion of sales from all of those candles goes to the International Foundation for CDKL Research.
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