Written by Editorial Team, DonateToday
Teenager blossoming despite spending around half her life suspected to be suffering from a rare medical condition
Teenager blossoming despite spending around half her life suffering from an illness which has never been fully diagnosed, thanks to help from Huddersfield hospice
- Bethanie's health problems started at age seven
- She began to get tremors in her arms
- An MRI scan revealed white matter on the youngster's brain
- Since then, Bethanie's body has continued to weaken
Her Body Has Continued to Weaken
Bethanie is described as a 'typical teenage girl' by her mother Johanna, thanks, in part, to her love for shopping
At age seven, despite apparently being a healthy child, Bethanie began to get tremors in her arms. After seeing a doctor, the youngster was referred for an MRI scan which revealed white matter on her brain.
However, despite this attention from medical professionals, a full conclusion on Bethanie’s illnesses has never been reached. ‘There still isn’t a full diagnosis for Bethanie,’ admits mum Johanna, speaking to Forget Me Not Children’s Hospice’s website. ‘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.’
"We all benefit from the support the hospice provides, and we just couldn't imagine our life without it now."
Lack of Support
Despite the severity of her condition, Johanna is completely open about the lack of support Bethanie had access to. ‘There just wasn’t anything to help us,’ she says.
Fortunately, the Forget Me Not Children’s Hospice opened in 2012 and aims to provide help and support for any family having to deal with the news that their child has a life-shortening condition. This support can be accessed during pregnancy or after a baby has been born.
This new facility was able to offer Bethanie one-on-one support that not only benefitted the child, but her family as well. ‘When she’s there, I get the chance to focus on my other two children,’ says Johanna.
‘We all benefit from the support the hospice provides, and we just couldn’t imagine life without it now.’
The Life She Deserves
The support she receives is not typical medical assistance either. The hospice’s Russell House facility has first-rate residential facilities and when Bethanie stays there, she is able to take part in activities she really enjoys including watching movies, having manicures and listening to music.
‘From shopping trips to lunch at her favourite Italian restaurant,’ Johanna enthuses, ‘The care team are great at helping Bethanie to live the life she deserves.