In support of Dravet syndrome, Annabel Hughes and her son Henry, will be climbing Ben Nevis on June 17—Britain’s tallest mountain.
The Hughes family has been directly affected by this rare form of epilepsy. Henry’s twin, Rebekah, was diagnosed with the syndrome when she was only 11 months old. Since then, she’s suffered hundreds of seizures. And that’s only one of the symptoms of Dravet syndrome.
The disorder also makes mobility difficult, creates eating problems, and causes irregular blood oxygen levels. To combat this, Rebekah has to use a saturation monitor 24 hours a day, seven days a week, which alerts her family when a seizure starts. Without this alert, the arrival of emergency services may not come fast enough for treatment.
The syndrome affects every aspect of Rebekah’s life.
Annabel decided to join the charity climb because she knows firsthand how draining Dravet can be—both emotionally and fiscally. For instance, a saturation monitor is over 800 U.S. dollars—an absurd amount for such a small, but necessary, object. So Annabel has made the cost of one monitor her personal fundraising goal.
The climb is being put on by Dravet Syndrome UK, an organization formed to help support the Dravet community. The organization’s goal for the fundraiser is 20,000 euros (22,387 American dollars), which will support their mission of advancing research and supporting families.
70 people are registered for the climb, and everyone has the same goal—make life better for the children and families affected by Dravet.
Rebekah’s mom notes how positive and goodhearted her daughter has remained despite the circumstances. The monitor has been able to provide them with some peace of mind, and they hope that this charity climb will give many other families the same sense of comfort.