Alaina Weaver was in line at the grocery store when her phone rang. She answered as she was unloading produce from her cart and was caught off guard when she heard “Alaina… I need you to go out and sit in your car.” Two things happened simultaneously: Alaina recognized the voice of her daughter Makayla’s doctor, and she realized she was about to get bad news. Shaking, she abandoned her groceries and walked directly to her car, sat down in the driver’s seat, and closed the door. The doctor spoke again: “You were right, I’m so sorry.” And just like that, her world blurred.
5 months earlier, Makayla was a happy, healthy 9 year-old. She’d never even really been sick. Then, one summer morning, she woke up with a headache. Initial visits to the doctors sent Makayla home with strong migraine medication, but none of it alleviated her pain. The months crawled by, and Makayla did not get an answer – or any relief. Doctors were hesitant to do invasive testing on a young girl but finally, Alaina demanded an MRI. She knew something was seriously wrong. Hours later, the call came to her in the check-out line of the supermarket.
Makayla had a Chiari Brain Malformation. “In that moment,” recalls Alaina, “our whole world changed.”
If you don’t know what a Chiari is, you’re in the majority. Chiari malformation is a brain abnormality of the cerebellum, the lower part of the brain. Makayla was having intolerable headaches because her brain was literally pushing against her spinal column. Surgery was scheduled straight away because Makayla’s Chiari was 6mm, a very large size. The back portion of Makayla’s skull, as well as her top two vertebrae, were removed to allow room for the Chiari. Because this malformation is actually part of Makayla’s brain, removal of this excess mass is not an option.
After the diagnosis and the surgery, the family struggled to find their “new normal.” Many things had changed. Makayla missed months of school due to procedures and hospital stays, Alaina quit her job to take care of her daughter full-time. However, some things stayed the same. Makayla is, in many ways, just a 13 year-old girl. Bright, kind, and talented, she has lots of friends at school and can typically be found glued to her phone. However, she was the only 13 year-old girl who would fall at school. Because of the Chiari, Makayla’s nerve signaling can sometimes be compromised and she can lose her balance. Falls are not only dangerous for Makayla – they could be fatal. There were two options: a helmet or a service dog. We’ll let you guess which one Makayla chose…
The only problem was that service dogs were expensive. Alaina, her husband, Makayla and sister Alyssa were all living on a single income since Alaina quit her job. Luckily, the family had great insurance. Unluckily, the cost of a service dog was not covered. Desperate for help, a social worker from Dell Children’s Hospital recommended Makayla apply to Chive Charities.
With a $5,000 grant from Chive Fund, we purchased for Makayla a trained service dog named Bailey. She caters to Makayla’s three main needs: balance, bark on command, and emotional support. When Makayla’s brain doesn’t send nerve signals the way it should she gets dizzy, and Bailey will break her falls. If Makayla were ever stranded or needed help, Bailey is trained to start barking and not cease until help arrives. And lastly, and maybe most importantly, when Makayla isn’t feeling herself, or her blood pressure is too high or too low, Bailey will cuddle and give her the support she needs.
Once Bailey and Makayla met, they were inseparable. According to Alaina, Bailey never stops looking at her. Possibly because she was trained to do so, or possibly because Makayla has that effect on people. For Makayla, the change was dramatic. Now that she has a responsibility, something to focus on other than her pain, the turn-around in her personality has been “dramatic.”
Since her diagnosis over 3 years ago, Makayla has undergone no fewer than 28 brain surgeries. Doctors maintain her shunts, which allow a release for the ever-building pressure Makayla constantly experiences. There is no cure for Makayla, and her long-term prognosis is unclear. For four years, she has “never not been in pain.” But to look at her… you would never know.
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