Cassidy's Story
Cassidy is living with a terminal diagnosis. She is a regular visitor to Jacksplace, where the care and compassion she receives from our dedicated team gives Cassidy valuable and unique support. This is Cassidy's story.
Cassidy shares her story:
I’m Cassidy, a 20 year old from the Isle of Wight. While I’m fortunate to have a strong support network of lots of family and friends, it’s just me and mum (my full-time carer, but also my closest companion) at home.
I like to think of myself as generally being quite shy and reserved but also at the same time being fairly self-assured and at ease around people I know well. I’d also regard myself as both sufficiently articulate and eloquent.
I live with multiple terminal and chronic illnesses, the most significant being a rare, severe genetic skin condition that is both terminal and comes with numerous comorbidities. One of the most critical complications is dilated cardiomyopathy (heart disease), which has deteriorated to the point that I am now in end-stage heart failure. In addition, I face daily challenges with joint dislocations, osteoporosis, scoliosis, recurrent sepsis, weakened enamel, orthostatic intolerance, severe hypotension, and constant infections, among many other complications.
However, the most debilitating aspect of my condition is the relentless, severe chronic pain. This is primarily from my skin, but also from my joints, spine, and bones. The reality is that I have never experienced a pain-free day in my life.
My condition has progressively worsened every single day since birth, and, in the past year, this decline has accelerated rapidly. I have been given only a few months left to live due to my heart failure deteriorating so severely and not being eligible for a heart transplant.
My condition affects every single aspect of my daily life, demanding an exhausting and relentless routine just to manage basic survival. Due to my severe skin condition, I must follow an excruciatingly extensive regimen every day. I spend hours, often up to six, soaking in the bath just to soften my fragile, painful skin. After that, I endure an agonising creaming routine, sometimes followed by being wrapped in bandages, a process that is not only time-consuming but also unbearably painful.
Beyond my skin care, I rely on a feeding tube, which requires constant attention - setting up feeds, preparing and administering medications, and managing complications that arise. I also have to monitor my vital signs throughout the day, as my body is in a fragile state. The sheer intensity of my pain often leaves me unable to move around the house, forcing me to spend long hours in bed, either asleep from exhaustion or unable to rest due to overwhelming pain. Hospital stays and medical appointments are a constant part of my life, further consuming my already limited energy.
Every moment of my day is dictated by pain, fatigue, and the relentless progression of my illness, making even the simplest tasks feel insurmountable.
Despite the immense challenges I face daily, I still find moments of joy with the people I love whenever my condition allows. While my symptoms never subside, and every activity comes with pain and exhaustion, I cherish the times I can engage in things that bring me happiness. Whether that's spending time with family, enjoying a favourite musical, or simply sharing a conversation. These moments may be fleeting and often require immense effort, but they remind me that there is still light even in the darkest of days.
I don’t have specific hobbies, but I enjoy reading, embroidery, and music when my health allows. Theatre and musicals are my greatest passion, they provide a much-needed escape. Living on the Isle of Wight, I love spending time outdoors when it’s warm enough, whether meeting loved ones for a walk or brunch. Every day is unpredictable, so we take things as they come.
I also volunteer at a local playgroup when I’m well enough, which has been incredibly rewarding. Above all, I cherish time with the people I love. We have an amazing support system that means the world to us.
I’ve always been passionate about medicine, and if my health had allowed, I would have pursued a career in paediatric or palliative care. With 20 years of firsthand experience, I’ve gained a broad medical knowledge and enjoy taking courses whenever I can.
I was originally referred to Naomi House & Jacksplace by my cardiac team to initiate palliative care, ensuring I receive the specialised support needed as my condition progresses. Their primary focus is maximising my comfort, particularly through expert pain management and comprehensive symptom control. This support helps me navigate the daily challenges of my illness. Beyond medical care, they play a vital role in overseeing and coordinating various aspects of my treatment, working closely with my wider healthcare team. Being under their care has also granted me access to respite at Jacksplace, providing a compassionate and supportive environment where I can receive expert care, while finding moments of relief from the relentless demands of my condition!
Over the past 20 years, an indescribable portion of my life has been spent within hospital walls, probably amounting to years in total. My complex medical conditions have required constant hospital admissions, interventions, and intensive management. I have endured countless stays in intensive care, where I have faced critical moments, including being resuscitated and cardioverted. Surgeries have become a familiar reality, one of the most significant being the implantation of an ICD (internal defibrillator and pacemaker) to support my failing heart. Beyond hospital admissions, we have an endless cycle of medical appointments, procedures, and consultations, making hospitals an inescapable part of my reality but remarkably it reaches a point where you simply adapt to it!
Naomi House & Jacksplace have been an incredible source of support for both me and my family, and they will continue to be in the time ahead.
Their exceptional medical team plays a vital role in managing my palliative care, ensuring my symptoms are as controlled as possible. Beyond medical care, they provide me with the opportunity for respite. It's a chance for my mum to step back from her full-time caregiving role while their dedicated staff and medical team take over my care for a few days. During respite stays, I have access to invaluable resources, including their hydrotherapy pool for relaxation, physiotherapy sessions, and the opportunity to spend time with other young adults facing similar health challenges.
Stays at Jacksplace offer not only essential medical support but also a much-needed break from the harsh realities of my condition. Whether it's chatting with their compassionate staff or engaging in fun activities with the play and activities team, Naomi House & Jacksplace provide a rare and precious sense of comfort, understanding, and respite in a world that often feels overwhelmingly medicalised.
Another invaluable way the hospices will support us as a family is through the most difficult stage, end of life care. As my health continues to decline, they will be there to ensure I remain as comfortable as possible, helping to make each moment meaningful and creating precious memories for as long as time allows. One of the many things Naomi House & Jacksplace excel at is providing unwavering support, not just for the individual but for the entire family during this heartbreaking transition. Their compassionate care extends beyond my final moments, ensuring my loved ones are not left to navigate their grief alone. The bereavement support they offer brings me immense comfort, knowing that after I’m gone, my family will continue to be cared for, guided, and supported through what will undoubtedly be the most painful chapter of their lives.
It’s the incredible teamwork at Naomi House & Jacksplace that makes the hospice so extraordinary. Every individual plays a vital role, from the specialist doctors, nurses, physiotherapists, and carers to the play and activities team, chefs, and volunteers. It is their collective dedication, compassion, and unwavering support that make the hospice such a special place. Each and every one of them treats me with such kindness and care, and it’s their combined efforts that create an environment where I feel truly valued and supported.
To any child or young adult in need of support from Naomi House & Jacksplace, I would say this, forget the common misconception that hospices are places of doom and gloom. Naomi House is full of life - bright, colourful, and filled with fun, laughter, and warmth. Jacksplace, while still vibrant, is tailored for young adults, ensuring you’re treated with the respect and independence you deserve. It’s a place where you are seen as an individual, where your care is personalised, and everything is taken at your own pace. Whether you need medical support, a space to relax, or simply a break from the challenges of daily life, the team is there to make sure you feel comfortable, valued, and, most importantly, like yourself.
The palliative care and pain management provided by Naomi House & Jacksplace has allowed me to make the most of every moment over the years.
Now, as I face the reality of only having a number of months left to live, their support is more invaluable than ever, helping me to embrace each day with as much comfort and dignity as possible.
It is absolutely critical to support charities like Naomi House & Jacksplace. Children and young adult hospices receive only around 14% of their funding from statutory sources, leaving the overwhelming majority of costs to be covered through fundraising, sponsorships, and donations. This isn’t just inadequate, it’s unacceptable. Hospices provide essential, life-changing care for those with terminal and complex conditions, not forgetting the bereavement support they provide to families, so they are not left to face their grief alone, yet they are forced to fight for the funding they desperately need to continue their work.
With only three hospices for young adults in the UK, including Jacksplace, and a limited number of children's hospices, the reality is stark, without support, these lifelines disappear. Hospices are not a luxury, they are a necessity. Your support ensures young people receive the dignity, comfort, and care they deserve, both in life and beyond. Without urgent and continued financial backing, these lifelines for young people and their families simply cannot exist.
If I could say anything to the incredible people at Naomi House & Jacksplace, it would simply be, thank you. Thank you for creating such precious memories, for your unwavering kindness, and for making me feel seen, heard, and valued. Unlike the often clinical and impersonal nature of hospitals, you have always treated me as an individual, not just a patient. Your compassion and dedication have made an immeasurable difference in my life, and for that, I am endlessly grateful.