Rare KC is a new organization in Kansas City for families dealing with children with rare diseases.
It's estimated 250,000 people in the greater KC area are impacted with a child with a rare disorder or disease. Tara Zahner is one of those people.
Her 19-month old son, Andrew has a disorder that doesn't even have a name. It was first diagnosed in 2005 in Germany.
Andrew is missing a gene on his fifth chromosome. The disorder is simply referred to as 5Q14.3.
The missing gene causes Andrew to experience multiple seizures and could lead to developmental delays. Only 50 other children in the world have it.
Until recently, Tara used social media platforms to connect with other parents in countries like the Philippines and Australia who have children with the same diagnosis as her son, Andrew. Through Rare KC, Tara is meeting with parents who are dealing with children who have a similar diagnosis right here in the metro.
"It's scary when you think about the fact that your kid has a disability and he may not have anybody like him to grow up with. When I found these other families as part of the Rare KC Project, I now feel like he'll have some birthday parties to go to and he'll have some kids to invite to his birthday parties as well," Tara explained.
Kelly Ranallo, founder of Rare KC, has a daughter with a different chromosome deficiency called Turner Syndrome.
She started Rare KC to help give families of children with rare disorders a united voice to advocate for medical services, provide help from insurance companies, legislative initiatives, and community support.
Rare KC is having a Town Hall meeting Monday, February 29, at 8 a.m. at the Kauffman Foundation at 4801 Rockhill Road.
The free event is open to individuals, families and friends whose loved ones have been touched by a rare disease.
The Town Hall is happening on World Rare Disease Day, which will help raise awareness and improve access to treatments and medical representation for individuals with rare diseases and their families.
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Cynthia Newsome can be reached at cynthia.newsome@kshb.com.
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