Fighting hard to stay strong

Fundraiser to help girl recovering from AV malformations

By: Kristyne E. Demske | St. Clair Shores Sentinel | Published July 10, 2017

ST. CLAIR SHORES — Claire Wyckoff was like any other fifth-grader.

She loved playing outside, riding bikes, roller-skating and more.

But one day in the beginning of December 2016, she came home and told her mom that her arm really hurt. Amy Wyckoff said nothing looked wrong, so they iced it and chalked it up to growing pains. Three days later, however, “we go to take her shirt off and she’s screaming like I pulled her arm out of the socket.”

So Wyckoff and Claire went to urgent care, who sent her to St. John Hospital, where they took an X-ray but didn’t see anything wrong.

“Friday, she went to school, she plays dodgeball (and) she’s the last kid standing,” Wyckoff said. “On the weekend, we alternate between hot and cold compresses, but she’s asking for Motrin every two hours. It’s just not helping.”

And by the end of the weekend, Wyckoff said that Claire was dragging her right leg and holding her right arm at a funny angle.

“I just know, at this point, that it’s neurological,” Wyckoff said.

Her pediatrician sent them to Children’s Hospital of Michigan to do an MRI to see if Claire had had a stroke. The doctors there told the Wyckoffs that they found a lesion on Claire’s spinal cord and she was being sent to the pediatric intensive care unit, but they couldn’t tell them anything else until the morning.

“I have never felt such extreme fear in my whole being,” Wyckoff said.

Claire was diagnosed with an arteriovenous malformation of the cervical spine Dec. 5.

According to Johns Hopkins Medicine Health Library, AVMs occur when the connections between veins and arteries don’t form correctly and become entangled. In the spinal area, they can cause problems with circulation because the AVMs interfere with the body’s blood flow. While arteries normally transport oxygen-rich blood away from the heart to cells throughout the body, the malformations of the arteries and veins in spinal AVMs don’t allow this to happen because of missing capillaries, which regulate blood flow.

Typical symptoms of AVMs include muscles that feel weak or become paralyzed; problems with balance and coordination; and pain, tingling or numbness throughout the body.

Claire’s AVM was in the neck region of her spine. She had surgery Dec. 15 to remove it, which took 3 1/2 hours. After surgery, she was paralyzed.

“She can’t use her right side, she’s incontinent and she can’t walk, she can’t use her right arm. Can’t move the fingers,” Wyckoff said.

Not one to be daunted by challenges, Claire underwent extensive therapy and was able to leave the hospital continent and walking short distances in February. She was even able go back to school at Harmon Elementary in Lakeview Public Schools three times a week while undergoing outpatient therapy treatments twice per week.

In April, Claire had a follow-up angiogram to check for healing. That’s when doctors found a second AVM.

“The first time, it ruptured. It bled into her spinal cord, and nerves don’t do well with blood. That’s what causes the pain,” Wyckoff said. “The second one that they found, they didn’t find initially because of all of the inflammation from the first bleed.”

The second AVM was much smaller, but Wyckoff said that actually wasn’t good news because smaller AVMs typically bleed quicker and tend to rupture. So on April 12, Claire went back in for another surgery, this one taking 12 hours. Doctors found a feeder connected to the second AVM that could have created another malformation, and they removed that as well.

“Then we went back to square one,” Wyckoff said.

Once again, Claire was paralyzed and incontinent. She moved to the rehabilitation unit April 21.

“We’ve been here for a lot of holidays,” Wyckoff said, including Claire’s 11th birthday in May.

Claire was set to be discharged from the hospital June 30.

“The first time, we came home super confident. She had a lot more strength. This time, she’s weaker,” Wyckoff said. “The best thing about Claire is, she knows she’s going to get better.”

The family has had a challenging time balancing Claire’s care. Wyckoff stayed at the hospital during the week, and Claire’s father, Glen Wyckoff, stayed Friday and Saturday nights. The couple also has a teenage son, Connor, who graduated from Lakeview High School in June.

“I’ve been off work six months,” said Wyckoff, who works at Redwood Dental Group in Warren. “We tried to make it as normal as possible for our son. He is a great kid, but I wanted him to have a great senior year without being overshadowed by this. The things you think are a big deal aren’t anymore.”

But through it all, she said she can’t believe the outpouring of support from the community. Every fifth-grade teacher at Harmon Elementary has taken turns coming to tutor Claire, and a sixth-grade teacher from Jefferson Middle School will be tutoring her this summer to make sure she’s up to speed in math and anything else she will need to start middle school in September.

Claire’s best friend, Abigail Kempski, came to visit her as often as she could while Claire was hospitalized.

“For a kid to stand by like that, though all of this, is very heartwarming. It’s just amazing,” Wyckoff said.

Kempski’s mother, Nicole, and another friend of Wyckoff’s, Donna Beras, have organized a fundraiser for a medical fund for Claire and the Wyckoff family.

“They’re a great family who’s always first in line to help everyone else, and I think it’s important to take care of each other in the community,” Kempski said.

She said their daughters have been friends since kindergarten.

“Our families were devastated together and it was a very scary time,” Kempski said. “Abigail, of course, was very concerned about her best friend, and Abigail’s been there as much as we can get her there and going to some of Claire’s therapies with her.

“I would like Amy to be able to stay home and take care of her family without having to worry about the worries of everyday stuff.”

A pasta dinner fundraiser and celebration is set for 6-10 p.m. Aug. 3 at Eastpointe Manor, 24611 Gratiot Ave., in Eastpointe. Tickets cost $20 for adults and $15 for children 3-10 years old and include one free raffle ticket. There will be raffles, face painting, a DJ and a cash bar.

Tickets are available from Nicole Kempski at (586) 634-7466 or at nkempski78@gmail.com, or from Donna Beras at dberas@st-anne.net or at (586) 216-8475. Donations are also being accepted at gofundme.com/7m-claires-medical-fund.

Wyckoff said that Claire will need follow-up angiograms and MRIs until she stops growing, as doctors have said AVMs mostly recur in the growing years. The malformation isn’t genetic or hereditary, but occurs congenitally, so Claire likely had it her entire life before it ruptured.

Now Claire is back on the road to recovery, starting to move the fingers on her right hand. She has learned to write with her left hand and is still wheelchair-bound but is working on building her strength and stamina.

Wyckoff said she’s just happy her daughter has been able to stay strong and courageous through the whole ordeal.

“It didn’t change her personality. It didn’t change who she was. She is a super feisty, funny, really smart girl,” she said.