Firstly I wanted to introduce you all to my mum Sandra, as I’m sure many of you will already know her. 

Our goal is to raise as much awareness and money for the Huntington's Disease Association. We thought it would a great time as MAY is Huntington’s Disease Awareness month. 

Myself and Mum sat down and spoke about organising a Raffle, which mum has also donated too (she wanted everyone to know that! Bless her) and we’re both happy to share our/her story! 

I’m not one for social media but sharing our story will hopefully help raise awareness and any money is an added bonus.  

And here it begins. 

If I personally had one word to describe Huntington's disease It would be a Tornado! 

It rips through families, tearing them apart and leaves you wondering why us. 

Huntington's disease is a rare genetic disease, it is passed on by a parent who carries the gene which in this case is my mum. This then exposes myself and my siblings to a 50% chance of inheriting the gene. Which then can be passed down to our children if we tested positive. 

After my mum told us that she tested positive for Huntington's disease, it became our family secret. Mum was a very proud women and worried about anyone judging her if they became aware of her diagnosis. A few years down the line, Huntington’s disease started to become visible! People would comment, people started to ask questions. It started to become our reality and is now our future. 

With the help from the NHS website I have been able to list just some of the symptoms. 

Over time, someone with Huntington's disease may develop:

• involuntary jerking or fidgety movements of the limbs and body
  

• difficulty speaking clearly – eventually they may find all communication very difficult

• swallowing problems – they may choke on food and get lung infections (pneumonia) from food going down the wrong way

• increasingly slow or rigid movements

• personality changes – sometimes they may change so they don't seem like their former self at all

• breathing problems

• difficulty moving around – they may eventually lose the ability to walk or sit up by themselves

Huntington's disease usually develops between the ages of 30 and 50 years old. 

My mums Huntington's disease is now fully establish, it has been for quite sometime. Mum has been dealing with what has been listed on the above and many more, on a daily basis. 

As a family, watching mums Huntington's disease progress has been a struggle! At times a real challenge. This disease has taken away the person we love slowly, piece by piece. When we feel we are on for a good ride, it pushes something else our way. Reminding us how much mum has deteriorated! It’s utterly heartbreaking! 

Huntington’s disease needs to be known, lets get this awareness out there! 

We would also like to thank the Huntington’s Disease Association for all their support they have given to everyone and continue to! This charity deserve the recognition!

Thank you to everyone for taking time to read our story. 

With Love 

Kate and Sandra (Mum)

The Huntington's Disease Association supports anyone who is affected by Huntington's disease across England and Wales. We pursue the best possible care; provide training & advice to families and professionals; raise awareness, and promote research towards better treatment and care.

https://www.nhs.uk/conditions/huntingtons-disease/

https://www.hda.org.uk