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Surviving pediatric stroke: Valley mom spreads awareness through weekend fundraiser
Valley mom Kaysee Hyatt has discovered that her baby daughter, Addison, is a real fighter.
When Addison was born, on Dec. 5, 2012, she seemed like a typical infant. But months later, Hyatt and her family began to see troubling signs.
They found that Addison had survived a rare pediatric stroke, just before birth.
“Until nine months ago when our daughter was first diagnosed, we had no idea that kids, let alone infants, could be affected by such a thing as a stroke,” Hyatt told the Record. “Having a daughter who has survived a stroke changed us, it opened our eyes not only to this whole other world that we live in now, but to all the things we as parents go through. We are so grateful for that.”
Hyatt has connected with a community of supporters and caregivers, who are helping Addison reach her potential.
“She is now a 16-month-old, fiery little red-head who is a true warrior,” Hyatt said.
May is National Pediatric Stroke Awareness Month, and Hyatt is promoting a special event, 8 a.m. to 7 p.m. Sunday, May 18, at the First Pick produce stand, 17910 State Route 203, Monroe. The shopping and food fundraiser helps the Children’s Hemiplegia and Stroke Association, or CHASA.
Hyatt answered questions about pediatric stroke and her family’s experience.
What happened to Addison?
“At around 4 months of age, babies begin to bat at objects and unclench their fists more, (and) we noticed that Addison was not doing this with her left hand. We mentioned it to her pediatrician and got the ‘watch and wait.’ At 6 months, it became very visible that she had right-side preference. So at around 6 months, the journey for diagnosis began.
“We’ve had to hold Addison down for a number of tests now. Blood work, X-rays, but the scariest, of course, was her first MRI. When we were brought into the MRI room, it was freezing. Both I and my husband were filled with anxiety, just clinging to her. They gave us the option of being with her while they sedated her. Of course we stayed, but we weren’t prepared to hold her down as she screamed and they put this little mask over her face to make her go ‘night-night.’ It was absolutely heart-wrenching.
“Waiting on test results is agonizing, especially when this is the modern era. I have unreal expectations. After Addison’s first MRI they said they would call with the results as soon as they had them. In my mind, how long could that take? We were taking our first camping trip that weekend when we finally found out and were in and out of service coverage. I remember missing the call from the doctor. She had said in the voicemail that the MRI did indicate an injury resulting from a stroke. Time stood still.”
Who has helped in your daughter’s recovery?
“Encompass has been a life-saver for our family. Right away we were able to get into the early intervention program with them… Their therapists have become part of our family. I would love to see them get the recognition they deserve and let families know about their services right here in the Valley. I had a blind eye on what they provided until we really needed it.
“Children’s Hospital is also a huge provider in our daughter’s care.
“When Addison started therapy, she was 8 months old. She had just rolled over to one side but couldn’t sit unsupported, her core was so weak. Her left hand was completely clenched with her thumb tucked in—a classic trait. She would sit slouched in her highchair and needed a ton of snuggles to avoid meltdowns during therapy. The improvements have been vast since then! The therapists come out once a week, but for us, we make therapy in our home an everyday thing. Addison has gotten very used to it this way.
“She just turned 15 months and our newest adventure right now is that she is four-point crawling and pulling to a stand! It’s beautiful! She still doesn’t use her left hand for fine motor skills, but when it comes to crawling (a large motor skill) her little mind has put it together on how she needs to use both sides to get somewhere. And the stairs in our house are her mountain. We put a lot of therapy time into those stairs, and she is getting it!
“With Addison being so young there is still so much we don’t know. It’s a watch and wait experience.
“When she reaches the point of walking, she will most likely need to wear a brace or need assistance from a walker at first.
“When it comes time to conquer something with two hands, she may just find a way around it with one. As much as we continue to work with her left side it may never function the way her right does and that will be something we will just have to push through.
What’s a good place or website to start?
“Our saving grace was coming across CHASA.org. CHASA is a nonprofit organization founded by parents of children who survive stroke.
“Since 1996, they have served as a source of help and hope for families of children who have survived an early stroke. CHASA programs directly benefit families like mine by providing online support and information, local groups and a national family retreat, mom weekends, shoe exchange program, college and athletic scholarships, orthotic grants, research funding and awareness initiatives.
“Finding this group was the very first breath we had taken after Addison’s diagnosis.
How can others help?
“Even if you aren’t dealing with pediatric stroke, understand that some families are and we need your support.
“Anyone can help by spreading awareness. It’s not just our family, there are many families faced with this journey. Any parent should want to know the facts about something, if it can affect their kids, as well just sharing with their kids that differences are OK.
“Wear purple or come to our awareness event on Sunday. We will be sharing information on pediatric stroke. Awareness items and Texas-style barbecue (will be) for sale, with the proceeds being donated. It will be just a heartfelt, awareness event, all toward pediatric stroke and CHASA.”
• To learn more about the benefit, or donate, visit www.crowdrise.com/ourlittlewarriorprincess/fundraiser/kayseehyatt.