We spoke to Paramjit who has attended our Juvenile Huntington's disease family weekend with her daughter Sheenam for many years.
It is important for us as parents to have the space to share our heartache, share our experiences and see the joy on our children’s faces when they have achieved something which they may never have had the opportunity to experience.
Can you tell us a little about your background and relationship with Huntington’s disease?
"I had an arranged marriage and we were unaware of the disease running in my husband’s side of the family. My father-in-law who lived in India was diagnosed at a very late stage in his life after he was nearly 70. At that time it was not something which was commonly known or diagnosed. My sister-in-law sadly died about two and a half years ago. Huntington’s disease became part of my vocabulary in 1990 when my husband Harbhajan was diagnosed. He died on 14 October 2002, Sheenam was unfortunately diagnosed with Juvenile Huntington’s disease the day after his funeral."
When was your first family weekend and how many years have you attended?
"If I recall correctly we were one of the first families to attend the Juvenile Huntington’s disease camp since it first started running. In fact, Sheenam was a volunteer at the family weekend in the New Forest soon after her dad was diagnosed with Huntington’s."
Please tell us about your first experience at our Juvenile Huntington’s disease weekend?
"Attending the Juvenile Huntington's disease camp for the first time was the most incredible experience ever and it has left an indelible mark on my heart. I had not seen any other young person with the disease besides my own daughter Sheenam. At the time Sheenam was able to walk, talk and eat. Because of not being exposed to other families, we were unaware of the devastation some families were facing. I remember seeing a very young girl maybe around seven years old who had Juvenile Huntington's disease. I remember going to my room and couldn’t stop crying. I felt grateful that Sheenam was a bit older and had seen some life. The dedication and the tenacity of the parents astounded me."
"We saw another family where more than one sibling had Juvenile Huntington's disease. It broke my heart. The parents’ love for their children shone through and in my heart, I was totally grateful to Huntington's Disease Association for organising such an amazing opportunity for myself and other families. I remember my heart being so very full of joy seeing Sheenam canoeing, climbing the climbing wall and going on the indoor zip wire. She truly loved the adrenal rush and capturing her beaming smile is a moment I will treasure forever."
"Having the opportunity to share experiences with other families whose young adults were showing more progression of the disease was comforting and heart-wrenching at the same time. Having experienced this weekend for the first time was amazing from the point of view that the staff from Huntington's Disease Association and the staff at the Calvert Trust went out of their way to enable everyone to do the things that other children can do. Spending quality time with the parents away from the young people where we could share and learn in a totally unconditional and non-judgemental space was reassuring. People were so generous with sharing their experiences and what was helpful in coping. What I also noticed was not having to worry about Sheenam making a mess whilst eating and being frowned upon by others. It was a place where we could totally be ourselves and not be worried about what other people might think."
What was your fondest memory of one of the weekends?
"There are so many fond memories I have. The two that really shone for me were when Sheenam and I bought our saris and Indian suits for the staff and young women to try on. It was such an array of colours. Sheenam’s face just shone as she gifted some of her clothes to others. Sheenam’s highlight of the weekend was when she presented cheques from her charity ‘Sheenam’s Wish’ to the young people to have some fun. Her heart is so full and her smile is something that I will never forget as Sheenam gets so much pleasure from giving."
Please tell us what both you and Sheenam get out of the weekend and why you return year after year?
"As soon as we leave the weekend we are looking forward to receiving an email giving us the dates of the next weekend. It feels like we are addicted! What Sheenam gets from the weekend is a sense of adventure, being around other young people whom she can relate to even though she can no longer speak she still feels totally included. As mentioned previously it’s about making memories. It’s like a big family reunion. It’s something that keeps Sheenam going and something to look forward to. The photos give us a talking point to reminisce about the good times. The care and dedication of the Huntington's Disease Association staff and the Calvert Trust staff is second to none. The time, care, commitment and dedication to make this a fun experience for all is so very evident. It’s a place where we can be ourselves totally, cry if we want to, laugh, and share our knowledge and frustrations in a place where we are not judged. It is a place that totally embraces all of whom we are as human beings dealing with such difficult circumstances."
"The sharing time with parents is something that I welcome because on the whole, it feels like a very lonely misunderstood journey which we have to navigate on a daily basis. Sharing lived experiences makes it such a rich environment – it’s like heaven on earth for a weekend before we have to face the world again. And of course, Sheenam loves giving out grants from her charity. That brings her immense pleasure."
Why are events like the family weekend so important for our community?
"Events like this are so very important for our community because out of 365 days a year we are able to spend a weekend together in a place where we and our loved ones are making memories. We feel very sad when we attend a weekend and some family members are not present. There could be many reasons including they are no longer able to travel because their condition has deteriorated or their loved one has passed. Time is of the essence with this disease. Seeing your young person, your child dying a thousand deaths a year is something that cannot be put into words. It’s the daily grieving that goes on. The person is still alive however we are witnessing them slowly losing one ability after the other. It is as though we as parents have a knife dug in our hearts and it is slowly being turned. We don’t know when the next ending will happen. We are grieving daily. So this weekend helps to create special memories and to know in our hearts that we have done everything to bring a bit of joy to the young people which they may never have if it wasn’t for these weekends."
"It is also important for us as parents to have the space to share our heartache, share our experiences and see the joy on our children’s faces when they have achieved something which they may never have had the opportunity to experience. I feel that when we know we have done our best and when the inevitable happens it makes it a little easier to grieve knowing we have done our very best for our loved ones. This would not be possible without the support, care and compassion of the Huntington's Disease Association it is simply a lifeline which gives us the power and tenacity to keep going under untenable circumstances. There is no price we can pay for capturing a smiling face, full of joy of our loved ones. We will only be left with these memories."
What would you tell someone who was considering donating to this appeal?
"Do you want to bring a smile to a young person’s face? Do you want to feel you have contributed to elevating the stress for parents of young people with Huntington’s disease? Do you want to have the pleasure of knowing that you have created memories and joy?"
"Through donating you will be making a lifetime of memories for the families. You will be contributing to their emotional wellbeing. You will be offering them an opportunity to be in a place where they really feel at home in a non-judgmental environment. Your contribution will support loved ones/ parents/ carers to witness the joy of the young person being able to try a new activity, an adventure which they never thought they would be able to because of their disability."
"There is no price that can be paid for capturing memorable moments of their loved ones. No parent should have to see their child die before them however knowing that you have contributed to making memories which can never be taken away is priceless. Your donation will contribute to making special memories."
Thank you to Paramjit 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.
