Hi everyone, I’m Danielle and I’m HD Positive.
My mum, Lisa, was diagnosed with Huntington’s Disease in 2002 when I was 14 years old and my sister, Sophie was 12.
Mum didn’t know that HD was apparent in her family, her mother died when my mum was just 4 years old. My grandmother committed suicide, more than likely because of her undiagnosed HD.
My mum has always lived life to the full. She worked hard as a carer and managed a rainbows group when we were young. We were fortunate enough to have some lovely family holidays, making sure we made the most of this before mums condition deteriorated.
Mum loved dancing, playing darts, dressing up beautifully every day, partying and socialising. We still made sure she could attend dance classes until it became too difficult.
It was really hard for me to watch my mum suffer and watch her condition worsen but it has made me the person I am today.
I wasn’t by any stretch of the imagination an easy teenager.. (who is?!) but I felt the anger of mums HD most days, this stays with me now.
In 2012 we required carers to come in and help with mums personal care. We struggled to get mum to accept help and found it very difficult to explain mums condition to the care agency we were using. We made it very clear that consistency is key and it would be very beneficial for mum to have the same carers coming in every day. This didn’t happen, mum became even more agitated.
We met a carer from the agency, that struck up an instant bond with mum, my sister and I went to school with her too. We wanted to employ her on a full time basis to care for mum and her quickly declining condition.
In 2013 we asked social services for support with DLA and mum was eventually given basic rate which didn’t fully fund a full time carers wage.
We needed to pay the rest from money which we raised at our annual charity ball.
We were consistently let down and I felt that everything was a fight! We decided in 2018 to set up a charity in mums honour to help sufferers of HD and their families with advice, support and grants.
In 2018 we applied for CHC funding which mum was declined, we reapplied and eventually mum was granted CHC in January 2019.... we were elated, as it had been such a fight to try and get the funding. This is where the fight had only just begun! Up to 4 weeks after CHC is granted, payments should start.
Local authorities stopped mums direct payments in June 2019, after a huge battle and several formal complaints we had our CHC funding payments through in October 2019. Four months without any funding for two full time carers and one part time carer, we needed to dip into charity money to make sure mums carers wages were covered.
I want to help raise awareness for HD and other related illnesses, to help those suffering in silence. I want to campaign to change the “one form fits all” method and unnecessary points system that is involved with these forms.
Neurological illnesses and the people suffering deserve more care and attention.
I first started talking to Emma and Kelly in 2018. Their family basically mimics ours, our mums are so alike in so many ways and such beautiful strong women.
I’ve joined Emma & Catrin on their Campaign for my Brain journey to help be the change!
Head over to Lisa Smart Huntington’s Support Trust for more information about our charity.