Meet Claire: 2018 Family Advocacy Day Champion
Claire is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Claire will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.
Like many 10-year-olds, Claire was an incredibly active kid. In fact, it was while doing a cartwheel that the first signs of Claire’s health problems arose. What initially was thought to be a pulled muscle on her arm led to a diagnosis of arteriovenous malformation (AVM) of the cervical spine.
AVM is a rare, abnormal tangle of blood vessels in or near the spinal cord that can lead to a host of serious health conditions — including paralysis and loss of bowel or bladder control.
Claire was immediately admitted to the PICU at Children’s Hospital of Michigan, where she eventually had surgery to remove the AVM located in her neck-area along the spine.
Following the surgery, Claire underwent inpatient therapy for several surgery-related complications — including paralysis on her right side and incontinence — until she was able to regain her ability to use the bathroom and walk short distances. Claire continued with her therapy as she readjusted to going to school and her extracurricular activities.
During a follow-up visit to check on the progression of her recovery, doctors found a second AVM that was more serious than the first. The second surgery left Claire incontinent and paralyzed once again.
Although the recovery from the second surgery has taken longer than from the first, Claire and her parents remain optimistic for her long-term prognosis. They are grateful for the care she has received at Children’s Hospital of Michigan.
“We believe Claire received very specific care that she most likely would not have gotten at any other hospital,” said Amy, her mother. “From her pediatric neurosurgery team, to the PICU, to her dedicated rehabilitation team — other hospitals would have treated her like another patient, but at Children's Hospital of Michigan, she was cared for by teams specializing in children.”
Amy continued, “kids heal and comprehend their care and what is expected from them differently than adult patients. A hospital dedicated to children's care and healing was — and is — the key to Claire's recovery journey.”
Despite the setbacks in her recovery, Claire looks forward to a bright future, in large part due to the commitment and care of her "village." She hopes one day to become a pastry chef and own her own a bakery.
To learn more about Claire and her health journey, check out this article from Children’s Hospital of Michigan.
Join us in welcoming Claire to 2018 Family Advocacy Day!