Family made special preparations for first grader
FRONT ROYAL — More than a year after major brain surgery for a blood vessel disorder, lively 6-year-old Jozie Palmer began her first grade year at Hilda J. Barbour Elementary School.
Jozie was diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT) in June 2013. The disorder, passed genetically, manifests in occurrences called arteriovenous malformations (AVMs): abnormal direct connections between veins and arteries that can lead to strokes or seizures. She successfully underwent surgery in January 2014 for a potentially fatal AVM within her brain, but she’s developed multiple AVMs within her lungs since then
Jozie has received treatment for one of the AVMs through an embolization procedure that inserts a metal coil to block an artery that brings blood to the AVM.
Renee Palmer began preparation for her daughter’s school year by giving the school an informational packet on the condition for Jozie’s teachers. Every day, the school nurse will check Jozie’s blood oxygen with a pulse oximeter to record her normal levels. Over the course of the year, Palmer anticipates Jozie missing chunks of school for scans and treatment.
“This school year’s going to be hit and miss; I’m really concerned (about) the loss of time from school this year and being able to keep up,” she said.
Through advocacy group Cure HHT, Palmer has spoken with young adults that took a little more time than usual to get through school – mostly because of exhaustion.
“She has a hard time lasting as long as the other kids,” she said. “At that age, they all want to play chase and follow the leader type things, and she is just too tired.”
Although Jozie will always tire out more easily than most, even with the coil treatments, she has plenty of energy for hobbies.
“Right now she’s doing horseback riding, cheerleading and gymnastics,” Palmer said. “She just got cleared six months ago to start anything, and she’s doing all three.”
Despite Palmer’s concerns over missing school, she said the support and understanding she’s encountered from the school and the community so far has been encouraging.
“I don’t want to home-school her, I don’t think that’s a very good option for someone who’s already shy,” she said. “I think that public school is the best route, but then at the same time I don’t want her to be discouraged.”
Palmer is seeking out care at University of Pennsylvania’s HHT Center, which she discovered through her pediatrician, Dr. Michael Amster. According to Palmer, it’s one of two facilities in the country with an HHT Center of Excellence affiliated with a children’s hospital. There, Jozie would receive care from pediatricians acting under recommendations from the HHT Center.
AVMs can develop anywhere – Jozie still needs scans of her digestive tract after Palmer noticed blood in her urine in July and had her liver scanned. Because Jozie is so young, she can only handle the strain caused by scans and procedures every so often. Her endocrine system can only filter so much of the dye used during procedures, and the radiation used during scans can affect her growth.
Palmer said she’s also trying to raise awareness of the disorder by collecting signatures for the HHT Diagnosis and Treatment Act.
“Our goal is of course finding a cure for HHT, but I guess personally I want to see more pediatric doctors aware of his disease,” she said.
Although there is no HHT Center of Excellence in Virginia, Palmer said she’s thankful that the center in Pennsylvania is only five hours away and perfect for her daughter’s needs.
Find out more about HHT at http://curehht.org/.
Contact staff writer Rachel Mahoney at 540-465-5137 ext. 164, or firstname.lastname@example.org