Home Injectables Ella McKee, living with Vanishing White Matter disease, but pushing forward

Ella McKee, living with Vanishing White Matter disease, but pushing forward

Ella McKee, living with Vanishing White Matter disease, but pushing forward


HUNTERSVILLE, N.C. (WBTV) – When we first wrote about Ella McKee, she was a 3-year-old who had been diagnosed with Vanishing White Matter Disease. That meant this Huntersville girl’s brain was disappearing. The empty spaces left were being replaced with water.

Early last year, her mom, Heather, sent an update. Began like this:

“We are anxiously awaiting the email any day that could save Ella’s life. I keep waiting to hear if she’s getting into a clinical trial.”

A lot of overwhelming power in that sentence. Imagine waiting day-in and day-out for one email that might tell you if your child has a shot at life.

But it’s that candor from Ella’s mom, Heather, that draws you to her. It’s what I remember most from her first email, actually, back in January of 2020. (You can read that here >> http://tinyurl.com/EllaMKs).

Heather was full of heart, but direct. She had her daughter in therapy five days a week, enrolled in a language lab, and their whole family was doing everything possible to challenge Ella, while keeping her positive despite obstacles.

Heather said the clinical trial was slated to start soon in Amsterdam. There were only 20 available spots – 20 people worldwide – and Heather was desperately trying to assure Ella was one of them.

Turns out, COVID delayed the trial. It finally began last June.

“It’s the very first Guanabenz drug trial in Amsterdam,” Heather said. “This drug has been used on adult MS patients before and tested for years in mice. The results on the mice has been incredible. In fact, the drug sometimes brought back skills the mouse has lost. We can only hope the drug will do the same—or at least regress the disease—in Ella, and every other patient affected.”

Ella did meet almost every piece of criteria to be placed in the trial. She didn’t walk fully unassisted, but her mother said every other box was checked.

Ella, in fact, was only one of two children in the United States that possibly qualified.

Unfortunately, Ella didn’t get in it.

“Ella was disqualified because the ten steps she needed to take weren’t fluid enough,” she said. “Ella would pause between each step and the doctors wanted her to be more secure walking with light assistance. As you can imagine that was a dagger to our hearts. This drug trial was light at the end of a tunnel, and we were extremely sad to get that news.”

Without Ella, the Guanabenz drug trial in Amsterdam did start (again, last June) and is now up to its 8th child enrolled. Heather says doctors won’t be able to quantify any good or bad results until at least a year of participation.

“Even though our daughter isn’t in the trial, any news and information on Vanishing White Matter Disease is still a step forward,” Heather said. “We are keeping our fingers crossed for positive results and Ella’s continued health.”

As for Ella’s health, she will be starting kindergarten in the fall at Barnette Elementary and has been keeping up with weekly therapies.

She and her family recently traveled to Children’s Hospital of Philadelphia where doctors were pleased, but suggested looking into Botox injections to help relax the muscles in her legs and feet.

“This disease makes Ella’s legs so stiff that we physically cannot bend her legs,” Heather said. “By loosening the muscles doctors hope it will help her walk better. Currently, her main mode of transport is crawling, and her arms gave out recently bruising her chin badly. That was a big wake-up call to us. Often we pretend the disease doesn’t exist, so it doesn’t eat us alive thinking about it all the time, but this was a blaring reminder that it is absolutely affecting Ella.”

Despite the setbacks, Heather said Ella is ready to go to kindergarten and can’t wait to carry a big girl book bag.

“Another good thing we’re looking forward to is something happening in the Lake Norman area,” Heather said. “I recently went out on a limb and entered Ella and me in a ‘Mommy and Me’ fashion show thinking it would be something fun to do, and hoping the group would feature a girl with a disability. To my surprise the shop owner and festival’s producer emailed and said our story touched their hearts and they had to pick us! So, in June, Ella with her red walker, and I with all my pride, will be strutting our stuff down the runway.”

If you’re interested in knowing more about this fashion show, go here >> https://lknfest.com/

“Since we have entered the fashion show these two women and I have become friends and they want to do everything they can to help our family. The event’s producer, Tammy Domenick, made a website for Ella, collected donations for our family, is donating ticket sales proceeds from the fashion show to Ella’s fund. She also partnered when Aloft Hotel in Mooresville to host a karaoke night fundraiser for Ella. She has been an angel! Tammy was a publicist in New York and has a Rolodex of miracles. We’re hopeful to get Ella’s story on a national morning show to spread awareness of VWM disease. To think about telling her story on a large stage gives me hope again. I want to educate.”

Heather says personally, being able to give these experiences to Ella, all while trying to keep her healthy, has been good motivation. For anyone else wanting to follow along on Ella’s journeys, Heather also keeps up a website >> https://amiracleforellarose.com/

“This Momma Heart needs the love,” Heather said. “Thanks for continuing to write about our daughter.”


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