We spoke to Dal whose son Amo has Juvenile Huntington's disease. Dal formed a special friendship with another parent and they have gone on to make special memories together with their children.
This weekend – even though it only happens once a year lets the young people affected with Juvenile Huntington's disease and their siblings feel normal for a few days. No one looks at them and thinks “are they drunk” or "why are they moving like that". The parents get to have some time out knowing that their child is being looked after and so don’t need to worry. The weekend reminds us we are not alone on this journey.
Can you tell us a little about your background and relationship with Huntington’s disease?
"I'm Dal and mum to three adult children and our dog Luna, with Amo being my eldest. I gave up my nursing career in 2015, just before Amo was diagnosed - due to a bad working environment. I currently work part-time as a clerk for a team of barristers and this is my sanity and something which reminds me who I am - not just the mother/ daughter/ wife (I also care for my mum)."
"My journey with the Huntington's Disease Association started in October 2015 when Amo (24 years old at the time) was being tested for Huntington's disease. We never knew it existed in the family (I had separated from his father when he was six months old), and despite working as a CNS with extremely rare inherited metabolic disorders, I had never heard of or come across Huntington's disease."
When was your first Juvenile Huntington's disease weekend and how many years have you attended?
"2017 and have been every year since apart from during Covid when it didn’t take place."
Can you tell us a bit about the friendship you formed through the family weekend?
"We [Alison] met in 2017 at our first event and got on really well but didn’t keep in touch after that. We met again the following year, and we went for a long walk for about an hour, I found her so easy to talk to. We both opened up about our lives and the impact of having a child with a life-limiting illness. I think we spent the whole weekend chatting together and found we had so much in common. We exchanged numbers and spoke/video-called almost every week, sometimes more often. We met up a day earlier than the weekend the following year, and we went shopping and chatted all night. Since then, we have met up several times in Birmingham where we just shop and eat and enjoy each other's company."
"We have taken the children for a break to a cottage in Cheddar and had day trips, then we’ve met for an overnight shopping trip in Sheffield and Loughborough without the children. In 2020 we decided to take the children to Florida for the holiday of their life. That was booked and Alison bought me a Disney countdown chalkboard and we’d send pictures to each other of how many days left. We made lists and planned every detail together. We stayed in an apartment for 30 days and loved every day. Since we came back both children have deteriorated quite rapidly and I am so glad we went when we did. I do believe if it wasn’t for each other that trip may not have gone ahead."
As best you can, please tell us about some of your experiences at our family weekend and your fondest memory at one of the weekends?
"The weekend has given our children the chance to do activities that they would not have otherwise experience – I would not have thought it was possible. There are activities for the parents/ carers and the opportunity to chill and chat which is so relaxing. My fondest memory was last year I think. We went down to the lake and toasted marshmallows after collecting sticks for the fire. We went as a group but everyone was chatting and having a laugh and felt carefree for that hour."
Please tell us what you get out of the weekend and why you return year after year?
"I go because I get the chance to meet other parents who are on this journey of Juvenile Huntington's disease. I can open up and say what I really feel about the impact it has on my life – and everyone just gets it. I don’t need to cover up anything, I can be my true self. Everyone there whether they are further on in the journey or have recently started out, just needs that space to do that. We are able to share tips and strategies on how to deal with certain events or issues that are happening in our lives because someone has been there, done that already. I have set up a WhatsApp group with the other parents so that we can still stay in touch even if it is just to have a rant or moan or if anyone needs advice. That's why I go back every year – as well as the gorgeous food and how well we are looked after."
Why are events like the Juvenile Huntington's disease family weekend so important for our community?
"The space and opportunity to meet other families on the same journey. You don’t feel alone or that you’re a bad parent because you don’t feel like you can cope some days and just want to walk away."
What would you tell someone who was considering donating to this appeal?
"This weekend – even though it only happens once a year lets the young people affected with Juvenile Huntington's disease and their siblings feel normal for a few days. No one looks at them and thinks “are they drunk” or "why are they moving like that". The parents get to have some time out knowing that their child is being looked after and so don’t need to worry. The weekend reminds us we are not alone on this journey."
Thank you to Dal for sharing this story with us.
DOUBLE your donations
Between 28 November and 5 December donations made to us will be matched thanks to the Big Give.
Your money will go towards funding next year's Juvenile Huntington's disease weekend.
This means you can turn £10 into £20 or £50 into £100 with no extra cost to you.
