Derby mum shares experiences of rare disease within book during national awareness month

Categories: Care.

A Derby mum has shared her inspiring experience of her daughter’s Juvenile Huntington’s Disease diagnosis within a new book.

Paramjit Oberoi, 69, from Littleover 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.

 ‘Sheenam’s Story’, explains how in 2002 Paramjit’s daughter received her diagnosis of Juvenile Huntington’s Disease aged 19. Her 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.

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. May is national Huntington’s Disease awareness month.

Paramjit read extracts from her chapter at a book launch organised by Treetops Hospice on Tuesday 9 May. The local charity has supported the family for several years through their 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. 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.”

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, based in Risley, were honoured to host the book launch attended by Paramjit and Sheenam’s family, friends as well as Treetops staff and volunteers.

“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.”

‘Huntington’s Disease Heroes’ is available to buy through Amazon and other online retailers. 50% of the sale proceeds go towards the Huntington’s Disease Association.

To find out more about the charity Sheenam’s Wish and make a donation, head to

Treetops Hospice offer a peer support group for those living with and affected by Huntington’s Disease. The group meets every three months, and more information can be found on the hospice website at or by calling 0115 949 1264.

This year, Treetops Hospice is celebrating 40 years of caring for people and their families in the local community. During this time, the hospice has supported thousands of patients with end-of-life nursing care and bereavement counselling.



Photo captions: Paramjit Oberoi with the Huntington’s Disease Heroes book;Sheenam with Paramjit

About Treetops Hospice

Treetops Hospice, the leading end-of-life care charity in Derby, Derbyshire and Nottinghamshire, provides nursing care and emotional support for adults with life-limiting conditions, and their families.

The charity provides support from diagnosis onwards for patients with conditions such as cancer, motor neurone disease and heart and respiratory conditions.

This year, we are very proud to be celebrating 40 years of caring for people and their families in our local community. During this time, we have supported thousands of patients with end-of-life nursing care and bereavement counselling.

We have achieved this amazing milestone thanks to our dedicated volunteers who help across the whole hospice and in our charity shops, our hard-working staff team, and our supporters, past and present.

Last year, our team of Hospice at Home nurses provided over 20,000 hours of care to terminally-ill patients, working day and night to give much-needed support.

Our team of bereavement counsellors provided over 4,500 counselling sessions – more than 900 of them to children and young people. Wellbeing team members provide valuable information and support to those who need it.

Treetops is doing all it can to continue to support those in most need and welcomes donations to ensure the future of the hospice and its services:

A counselling session for a bereaved child costs £34.50. An overnight Hospice at Home nursing shift for a patient at the end of life costs £108.

Treetops Hospice, Derby Road, Risley, Derbyshire, DE72 3SS

0115 949 1264 |

Registered Charity Number 519540

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