By Matthew Santamaria (msantamaria@hdsa.org)
Everything happens for a reason. We meet different people in our lives because in life there is always a reason for that encounter. This was no different to Kayla Baldauf. On October 8th, she turned 12 years old and met Taylor York. Now, there is another word called destiny.
On that same day, Taylor was celebrating her 13th birthday. What are the chances that you are going to meet someone, share the same birthday, meet each other on that birthday, and end up being best friends. This is exactly what happen with Kayla and Taylor which is very hard to believe. These two were destined to meet each other as everything happens for a reason.
“I met my soul sister on our birthday,” Kayla explains. “No one believe us, but it's true. Taylor and her family are basically all I have. We have been there many times together. I do anything I can for her. I love her more than she will ever think or know.”
She describes Taylor as loving, caring, and loyal. Taylor is everything you can ask from a best friend. They would both be there for each other as your best friend is someone you can always count on. This showed through the hard times in Taylor’s life as Kayla was there every step of the way.
“In high school, she went to a party,” Kayla explains. “I got a phone call that she wasn't okay. No questions asked except I needed address. It was traumatic. Laying in her puke and blood where she hit her head. I cleaned her up and found out she took 14 pills.”
“I thought she was already dead as many emotions were coming out of me. But as my friend drove her car 100 mph to get her to the ER hospital there was a chance of hope.... she crossed her legs in the car seat. I screamed SHES ALIVE with the most happiest and grateful feeling ever. Once she was rushed in. The doctors thanked me, along with her family because she had 10 more minutes or she would have died. God is good.”
Taylor would also spend a month in a place for the mentally ill in but she had a second chance of life. Taylor became a mother to Ava, Allie, and Nathan. According to Kayla, she was the best mother that anyone could ask for. However, she would go through another battle. At the age of 47, her mother passed away from Huntington’s disease (HD), a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.
Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Recently, Taylor finally got the courage to find out the truth. It did not come back in her favor as she tested positive for the HD gene which devastated Kayla but both knew that they had to fight for Taylor’s children.
“When I first find out the hard truth, I couldn't stop crying or being vulnerable for a couple hard weeks,” Kayla explains. “One night I started crying, looking up at the stars, and asking God why. Then I felt this empowerment. I needed to be strong for her and spent hours and weeks studying this disease.”
After becoming active on social media, she would then get a message from Huntington’s Disease Society of America’s (HDSA) Kentucky Chapter. She would end up having a great relationship with the Chapter.
“They asked me to lunch and wanted me to join as a volunteer for the Halloween for Huntington's last year,” said Kayla. “I got to volunteer and work the event. It was so fun and successful. I felt so privileged. I plan taking out ads, posters, and spread the news about the fundraiser again this year.”
Currently, Taylor is 27 years old and lives in in Louisville, Kentucky. Kayla is 26 years old and now lives in southern Indiana with her daughter Nova Sky. Kayla is now looking to help volunteer in Kentucky. She wants to help volunteer at HDSA’s Hope Walk as she wants to help others fight this disease.
“I had to become strong for her,” said Kayla. “So here I am today with a start of many ways to help find a cure for the HD community. I'm in this to defeat HD. I'll never give up! I love my best friend and her family.”
For more information on support groups that can help you, please visit these websites:
National Youth Alliance
Suicide Prevention Lifeline (1-800-273-8255) available 24 hours every day
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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA
This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org