Local family helps sufferers of rare disease
To their Holladay neighbors and Olympus Jr. High community, they are just the Hollbergs. To 20 families worldwide who have a loved one suffering from Vanishing White Matter disease, they are hope.
Vanishing White Matter is a rare genetic condition that damages the nervous system. It most often manifests in young children, and at its worst can be fatal. When a family learns that their child has this disease, they can feel like they have nowhere to turn.
“There’s not much of a network to go to,” said Brett Hollberg, founder of the Vanishing White Matter Foundation.
He knows this from personal experience, because his own daughter Annabelle was diagnosed with the disease at age nine.
“She was just a normal little girl,” her mother, Susan Hollberg, said. Annabelle enjoyed playing with friends, tumbling and riding her bike before the disease started to progress, and then “she literally fell down one day and didn’t get back up again.”
Annabelle has been wheelchair-bound ever since, unable to do many of the things she used to; but she is alive, and a happy, positive person, Susan Hollberg said.
Launched in early 2012, the Vanishing White Matter Foundation is a nonprofit organization. It brings together families who have gone through what the Hollbergs have and worse, gives them an online forum to discuss issues related to the disease, and lets them know that they are not alone. The foundation also collects donations to help support the only three researchers in the world who are entirely dedicated to VWM, located in Israel, the Netherlands and here at the University of Utah.
“We’re hoping to find some sort of a cure, some sort of a treatment,” Susan Hollberg said.
Annabelle recently contributed to the fundraising in her own way. She swam 300 meters for pledges on Sept. 22, raising $8,000 as of press time. Late donations continued to trickle into the Foundation for some time after the event.
Swimming is one of the few physical activities Annabelle can still enjoy, and she does it well. The damage VWM has done to her nervous system prevents her from body from balancing well enough to walk, but that is no problem when water holds her up.
Her parents got her a pool soon after her original diagnosis, and since then she has become a strong swimmer, Brett Hollberg said. For the fundraiser swim alone, she spent five months training long and hard.
It especially meant a lot to her to see her friends gather to watch her swim for the fundraiser, since she has spent so much time alone in recent years, he said.
“That’s been meaningful to see that those friendships are still there, and the support’s still there,” he said.
Anyone who would like to donate to Vanishing White Matter research can do so at vwmfoundation.org.