Paramjit was chosen to contribute a chapter within ‘Huntington’s Disease Heroes’, a collection of stories written by 26 people living with or affected by the rare condition worldwide.
We were honoured to host a book launch attended by Paramjit and her family and friends, as well as Treetops staff and volunteers.
Juvenile Huntington’s Disease diagnosis
‘Sheenam’s Story’, explains how in 2002 Paramjit’s daughter received her diagnosis of Juvenile Huntington’s Disease aged 19. Sheenam's diagnosis came just a day after her father, Harbhajan Singh’s, funeral. He died from Huntington’s Disease aged 53.
In 2011, the family set up the charity ‘Sheenam’s Wish’. The charity gives grants to enable other young people affected by the inherited condition to have fun and fulfil a dream.
What is Huntington's Disease?
Huntington’s Disease is a condition caused by a faulty gene within a person’s DNA, that damages nerve cells in the brain, causing them to stop working properly.
Over time, the disease affects movement, cognition, and mental health.
There are approximately 7,000 people living with the incurable disease in the UK. Less than 10% of people have Juvenile Onset Huntington’s Disease, a rarer form of the disease.
The Book Launch
Paramjit read extracts from her chapter at a book launch hosted in the Wellbeing Space at the hospice. We have supported Paramjit and Sheenam for several years through our weekly drop-in Café and a Huntington’s Disease peer support group.
At 40 years old, Sheenam is no longer able to live independently. She cannot walk, talk, or eat without support. She is fed through her stomach (via a PEG) for her nutritional needs.
A story of hope
But Paramjit explained how her story is one of ‘hope and how to live a life.’
When Sheenam was diagnosed with Juvenile Huntington’s Disease, a much crueller form of the disease with a much shorter life span, my whole world came crumbling down.
“Seeing your child losing part of who they were daily is not something I would wish upon any parent. The emotional, cognitive and physical decline has been so hard to bear by me and Sheenam’s siblings who are a tower of strength for her.
“The hardest part has been Sheenam not being able to verbally communicate. Her only way of expressing her deep emotions is through crying. However, her smile makes up for everything. Somehow, she has still has the art of being able to say the three magic words to us: I love you.”
“What brings Sheenam the most joy“, Paramjit continues, “is giving out grants from the charity to other young people who have Juvenile Huntington’s Disease. Her face lights up every time we give a grant.
“The joy that ‘Sheenam’s Wish’ brings to these families is unexplainable. They have used the money to go to Venice, to gallop along the seashore on a horse, have fun at Alton Towers Water Park, go karting, spa days, attending football matches and meeting favourite players.”
Raising awareness of Huntington's Disease
Paramjit is passionate about raising awareness of the disease and making a difference to others affected.
I can use my voice to put Sheenam’s voice out in the world; to record her legacy whilst she is alive so she can see the impact she has made to the lives of others.
"For her to know that going through this disease has not been in vain. That she is bringing joy, and making a difference to people’s lives, despite going through her own trials and tribulations.
“I want to show people that there is great strength to be gained through adversity through having faith in the universal power, essence, force, God, spirit, whatever name we wish to give it.
“It is important for me to bring hope to a hopeless situation. Through Sheenam’s courage and conviction behind ‘Sheenam’s Wish’, I wanted to expose how we can find the ‘gem wrapped in sandpaper’. We have bought hope, fun and meaning to some young people’s lives through the grants.”
Treetops have lightened our load
“There couldn’t have been a better place for us to have held this book launch. It feels like Treetops Hospice has been through our journey with us and have lightened our load.
“Treetops has seen Sheenam from when she was able to walk and talk and feed herself to now when she needs 24/7 care. Their love and compassion has not altered one bit.
The moment I walked into Treetops many years ago, it was like heaven on earth. That feeling has not changed and both our lives are now richer. This is where I can be myself.
If I feel like crying, someone will take me aside and support me. If I’m struggling with aspects of Sheenam’s care and needed an advocate or advice, they have been there.
“Treetops staff and volunteers leave no stone unturned to support us in an unassuming way. They have been here to support us emotionally, physically, mentally and spiritually. Their delicate approach and understanding of our needs are second to none.”