Dup15q is RARE and in honor of my daughter, Kennedy, I’m hoping to raise $1,000 before Rare Disease Day on February 28! Please join me in this challenge!

Rare Disease Day is February 28 and Dup15q is a rare, genetic condition that occurs shortly after conception. Our daughter, Kennedy, was born with this rare disease. I’m not thrilled about using the term “disease” each year to spread awareness about her condition because many misinterpret such word to mean a sickness that must be contagious or easily spread. Dup15q is not contagious and in Kennedy’s case, it occurred randomly, i.e., it is not hereditary. Kennedy is almost 4 but struggled for the first two years of her life with debilitating seizures. We worried every day, and we continue to thank God every day for another day with her. Although her life expectancy is not greatly diminished by her rare disease, seizures can be fatal. Luckily, we have Kennedy’s seizures under control, but until more research and clinical trials are done for kids and adults like her, she will always be at risk for seizures. And many, like Kennedy did, struggle daily with seizures. Due to her rare disease, Kennedy also battles low muscle tone, Autism, intellectual disability, developmental delays, sensory processing disorder, balance issues, and she is nonverbal. But, Kennedy smiles! And, her smile will melt your heart. When Kennedy is happy, she squeals and laughs, and when she is sad, she cries. When she wants something, she gives you nonverbal cues and they work. She is also very sweet and takes pleasure in life’s most simplest things: grass, plants, wind, sunshine, lights, music, and interesting sounds. Kennedy struggles daily, but she shows determination in everything she tries to do. Things we take for granted: walking, climbing, sitting up straight, using a spoon, etc., and for that, Kennedy is our daily inspiration! Although she falls a lot, she doesn’t stop. She doesn’t give up. She keeps on going. She forces us to view life from a very different perspective. And, although rare, she is not alone. All Dup15q kids fight every minute of every day, and we need to help them fight!! We need to fight for more research about seizures and autism and gene therapy. Kennedy deserves every ounce of our fight. She is a bright light in this sometimes dark world. Help us spread this light. The Dup15q fundraising mission is simple: encourage personal philanthropy that helps underwrite research, potential treatments, and a variety of support opportunities for affected children and their families. Please join us in supporting the mission 🤗💙

Just a small donation will go a long way to helping me meet my goal for DUP15Q ALLIANCE.

To learn more about Dup15q Syndrome visit www.dup15q.org.