Meet the stars of this year's BBC Lifeline appeal.
Natalie and Heather are mother and daughter. Heather was a single parent but was described as a great mother to Natalie and her brother Mark.
Huntington’s disease was passed down through Heather’s mother's side. She has already lost her brother, sister, niece and two nephews to Huntington’s disease. Natalie and her brother have chosen not to be tested and plan not to do so.
When Mum was 42, she decided to get tested for Huntington’s disease, as we knew that it was in the family. Even though she didn’t have symptoms at this time, She felt with being a single mother, she needed to know what she was facing. When the results came back positive, we were all devastated but Mum was so strong and decided to move from our three bedroom house into a smaller bungalow.
Heather started showing symptoms in her 60s - symptoms are usually seen between the ages of 30 and 50 so this is quite a late onset. Her first symptoms were only very slight, and didn’t impact her life too much.
About six years later, the Huntington's symptoms started to develop more rapidly. Initially, she had carers at home four times a day but it soon became apparent that was not enough and she couldn’t manage between the carer's visits.
After a month in Pinderfields Hospital, it was decided between Heather, Natalie and a social worker that it was best if Heather went into a care home.
She spent a year at a home in Huddersfield. The home did help Mum when she was really poorly, but as her illness changed, they couldn’t handle her symptoms. She used to suffer from really high anxiety outbursts and they were just not equipped to cope with that so it was decided that we needed to find another home that was more suitable.
Heather and her family decided on Dearnvale care home. This was a care home recommended by the Huntington's Disease Association. Dearnvale has the charity’s Quality Assured accreditation and they have invested significant time, resources, training and commitment to offer specialist care for people with Huntington’s disease.
Mum is much happier there [Dearnvale] and feels like it is a second family for her. The staffing levels are quite high which compared to the other home which is a big difference.
Natalie utilised the Huntington's Disease Association throughout Heather's disease progression. The advisers were able to offer support and advice regarding Heather's care along with in person visits to help with the anxiety outbursts.
She [Diana, Huntington's Disease Association] really knew her stuff and put our minds at rest knowing that we weren’t alone. She even advised us on what medication would be best suited to Mum to help with her symptoms. If it hadn’t been for Diana, I wouldn’t have had a clue what to do.
BBC Lifeline Appeal
The BBC Lifeline appeal will air on Sunday 28 April at 12.50pm.
