When Gavin was born in 2015, his parents, Erica and Paul, decided to save his cord blood and cord tissue stem cells with ViaCord. They first learned about ViaCord through their doctor when they were pregnant with their daughter. They saved her cord blood stem cells then, hoping they would never need to use them. When their son Gavin came along a couple of years later, saving his stem cells as well seemed like a no-brainer. It wasn’t until Gavin was about two years old that his parents were concerned he wasn’t speaking as much as he should be for a child his age. Gavin saw multiple speech therapists before being diagnosed with Apraxia of speech. His parents didn’t know it at the time, but both of their children’s stem cells were going to play a critical role in Gavin’s treatment. Here is Gavin’s story and how receiving his own cord blood helped him find the words to speak.
"Gavin was born in 2015. He was a normal birth, a normal baby, and met all typical developmental milestones except for one - talking. At two years old, Gavin was only speaking 3-5 words, so his pediatrician suggested that we take him to a speech therapist to see if something was going on or if he was just a 'late talker'.
After seeing a couple of different speech therapists, one of them suggested that Gavin had Apraxia of speech. Apraxia of speech is a neurological speech disorder that affects the brain's pathways involved in speech production. It's uncommon and affects about 1-10 out of every 1,000 kids. Someone who has Apraxia of speech knows what they want to say, but there's a disconnect, and they can't get the words out. There is no cure for Apraxia, and Gavin was diagnosed with a severe case of it. The only way to improve his speaking ability was with speech therapy and lots of it. We flooded his little brain with as much speech therapy as we could.
Speech therapy was a long process but a consistent one. In July 2018, Gavin could only speak only around 140 words, making it apparent he was way behind his peers. As a mother, I was fearful for him. I was afraid Gavin wouldn’t attend a regular school or have normal friendships. I was even more afraid that he would get lost or hurt one day, and he wouldn’t be able to tell someone his name or that he needed help. It was scary that if you asked Gavin his name, he couldn’t tell you.
One night, while searching for anything I could do to help Gavin’s condition, I came across an article written by a parent who had children with Apraxia, and they had saved their cord blood stem cells. They worked with a doctor at Duke University to get their children an infusion of their own cord blood stem cells, and the outcome was amazing! I immediately contacted that doctor. She let me know there was a study starting at Duke University and that Gavin may be a potential candidate. It took about a year, but we were approved to take part in the study.
Gavin was almost four years old when he first received a portion of his cord blood stem cells that we had banked. Within weeks of receiving the infusion, Gavin went from speaking about 12-20 new words a month to 50-60 new words a month. Not only was Gavin saying more, but his focus and attention span increased. In June 2019, Gavin received a second dose of this own cord blood. His vocabulary was up to about 440 words by then. Within two weeks of the second infusion, we saw his vocabulary take off like a rocket ship. Gavin was saying more and understanding more words. It was awesome to see him improve so dramatically. In September 2019, Gavin received a portion of his older sister's cord blood that we had saved when she was born. At the time of Gavin's third and final cord blood infusion, he said about 615 words.
Weeks after the third cord blood infusion, his vocabulary expanded quickly again. In January 2020, Gavin was successfully saying and singing over 750 words. At this point, I stopped writing down everything he was saying. His teachers told me he was talking more and more each day at school, and when he was home, he continued to speak and request things. It was fantastic to see Gavin go from a child that could barely say hello or goodbye to a child that could tell me his name, request a drink, or sing songs while trying to play them on his sister's violin.
We never saw Gavin regress. He has continued to speak more and more years after his infusions. Gavin will be six years old in a few months, and it's incredible to see the happy child he has become. When Gavin was younger, he would get frustrated a lot. He would cry and was extremely quiet because he could not express his wants and needs. Gavin didn't have friends because he could not communicate with him. Now he talks all the time, and each day I am so thankful that he has a chance at a better life. Gavin is thriving in his kindergarten classroom, and behaving like a typical five-year-old.
To this day, Gavin continues to attend speech therapy but at a significantly reduced schedule. His words and syllables are clearer, and a stranger can understand what he says. Even with all the progress he has made, it’s important to remember that Gavin will always have Apraxia; this will not go away. We are thankful for everything that ViaCord and Duke University did for Gavin and our family. They gave our little boy a chance at life, a chance to speak to people, tell a story or ask for help. If we never decided to save our children's cord blood stem cells, and if Gavin had never received the infusions, he would still be struggling to speak. His progress would be slow, if at all, and for that, we are forever grateful.”
Follow us on Facebook, Twitter, and Instagram to join the conversation and stay up-to-date on cord blood & tissue, genetics, pregnancy, and everything in between!
Disclaimer: Banking cord blood does not guarantee that treatment will work, and only a doctor can determine when it can be used. PerkinElmer does not endorse or make recommendations with respect to research, medication, or treatments. All information presented is for informational purposes only and is not intended as medical advice. For more details and references, please visit viacord.com
Resources:
Nationwide Children’s. Childhood Apraxia of Speech Cases on the Rise. https://www.nationwidechildrens.org/newsroom/news-releases/2007/10/childhood-apraxia-of-speech-cases-on-the-rise
