Despite being diagnosed with a rare condition at the age of 7, Bethanie has blossomed and thrived with our support.
Bethanie was a healthy little 7-year-old when she started to get tremors in her arms. Her mum, Johanna, took her to see a doctor, who referred her for an MRI scan. That’s when they found the white matter on her brain.
"Although she’s had years of tests, there still isn’t a full diagnosis for Bethanie,” explains Johanna, “but we think she has a rare condition called leukodystrophy, which affects the brain, spine and nerves. Her body has continued to weaken significantly. She struggles with her hands, and she now uses a wheelchair.”
Forget Me Not appeared where there was nothing
“We’ve been supported by the hospice since it opened in 2012,” remembers Johanna. “Before that, there just wasn’t anything to help us. Thanks to the one-on-one support Bethanie has been getting from the hospice, which has been truly fantastic, she’s really blossomed.”
Into her teenage years
Despite her condition, Bethanie is now a typical teenage girl who loves music and shopping. “The hospice helps us all as a family, but the support they offer Bethanie includes letting her have the independence all teenagers want," says Johanna. "From shopping trips to lunch at her favourite Italian restaurant, the care team are great at helping Bethanie to live the life she deserves.”
When Bethanie stays at Russell House, she can do everything she really enjoys, like watching films, having manicures, listening to music, and just being herself. “And when she’s there, I get the chance to focus on my other 2 children!” smiles Johanna. "We all benefit from the support the hospice provides, and we just couldn’t imagine our life without it, now.”