Two Families Connect Over Children With Rare Disease

When dealing with a rare disease, it’s often hard to find someone else who’s experiencing the same situation. Someone to talk with, cope with, listen to. Someone who gets it. When two mothers of children with Dup15q Syndrome, a rare genetic disease, finally met, it gave them some of the help they needed, reported Dayton Daily News.

It was a long time coming for Jill Baker and Jennifer Kelly from Ohio. They had originally met on social media to help support one another, but an in-person meeting was due and it finally happened in West Chester at MidPointe Library.

Jill’s daughter Riley, now 11-years-old, was diagnosed at the young age of 6-months. While thankful for an early diagnosis, its affect has still been intense. She was initially diagnosed with infantile spasms, which is a rare type of seizure and that led to her genetic disorder diagnosis. Later on she was diagnosed with Autism as well.

Jill shares the difficulties and stress it takes on the family. Riley cognitively faces challenges, but luckily has room to grow. Jill also has a 22-year-old son. When he was younger he felt guilty for his sister’s disease. He blamed himself because he wanted to have a sibling. It’s hard to explain to a child that it’s not their fault, and that was very difficult for Jill to experience.

Jennifer has a daughter named Caitlin, who was diagnosed with the rare disease at 7-months-old. Physically she looks like any other kid her age, but that also makes it harder for others to understand the battle the family faces. When Jennifer’s family received the diagnosis, they were still reeling from the loss of their other daughter, Cecelia, who passed just over a year before Caitlin was born. Thankfully, due to Atrium Medical Center’s HEAL program, a group which supports bereaved parents, she was able to keep going forward after the loss of Cecelia. When the family received Caitlin’s diagnosis, and once again faced an imaginable grief, the Dup15q Alliance offered a similar type of support to a new type of pain.

“Just finding support and others that understand difficulties and celebrate accomplishments has been so good! That’s what the alliance and other families was able to provide.”

Jill suggests to any families struggling to find help early on. Connecting with Jennifer was something she had really needed, and now they have an opportunity to travel to Florida with 28 other similar mothers to learn more about the disease and discuss how it’s impacted their families. The connection they feel won’t solve all the challenges that come with the disease, but the support gives them the strength to face them.

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