Written by Editorial Team, DonateToday
Published: Friday, 5th January 2018

Hospice helping teenager who has spent half her life suffering from an illness which has never been fully diagnosed

Teenager turns to hospice for help having spent half her life suffering from an illness which has never been fully diagnosed

Written by ##author:callumpatterson## for DonateToday

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Bethanie's illness means she now has to make use of a wheelchair. Stock image of models.

Since her health problems began at age seven, little Bethanie’s body has continued to weaken. With such serious medical issues to contend with, the youngster has had to turn to help from a state-of-the-art children’s hospice in Huddersfield to enjoy activities that other children may take for granted.

Her Body Has Continued to Weaken

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. ‘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.’

Lack of Support

Despite the severity of her daughter’s 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.

The Forget Me Not Children’s Hospice was able to offer Bethanie one-on-one support that benefitted not only her, 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 our life without it now.’

"The care team are great at helping Bethanie to live the life she deserves."


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.

While Bethanie's life is still plagued by the illness that continues to confound medical professionals, the team at Russell House have worked wonders.

 ‘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.’