My name is Lucy Watts and I am 21 years old. I live in Benfleet in Essex. I have a life-limiting and life-threatening presentation of a condition called Ehlers-Danlos Syndrome, which is caused by faulty collagen. I have numerous other secondary conditions including Multiple Organ Failure (intestinal and bladder), Autonomic Neuropathy/POTS, Chronic Intestinal Pseudo Obstruction, Kyphoscoliosis, severe spinal degeneration, Osteoporosis, Hyperthyroidism, heart and respiratory problems and others. In my case I am attached to a pump 24 hours a day pumping all my nutrition (TPN), fluid and medication into a line in my heart. I also have a tube draining my stomach and two stoma bags bypassing my failing organs. I live in severe pain, I cannot eat or drink at all, I can’t do anything independently and I suffer severe breathlessness, nausea/vomiting, headaches, frequent joint dislocations and numerous other debilitating symptoms. I am bed bound except for short periods in my electric wheelchair, and this is why I am writing to you (I will explain more below). I love walking and training my assistance-dog-in-training Molly, writing, public speaking, photography, photo manipulation/graphic design and making videos. I also love learning and would love to do an Open University degree in Psychology and Counselling when I have time/when things settle down.
Despite my illness I do a lot of charity work giving speeches, writing pieces, appearing in videos/recordings/in the media and attending events. I spoke in Parliament in November 2013 on the transition period between children’s and adult’s services, meeting and speaking with Dr Dan Poulter MP, at a Together for Short Lives event for MPs and eminent professionals from the children’s hospice and palliative care field, and spoke at the Department of Health twice last year. I have worked with numerous charities across the health and disabilities sectors all with the aim of making a difference and using my knowledge and experiences constructively to benefit others. I’ve appeared in videos which have been played at conferences and events all around the world, including one at the World Health Assembly and another used in the training of Social Workers. I also have a blog with over 135,000 views (www.lucy-watts.co.uk) and recently was announced as one of the Health Service Journal’s 50 Patient Leaders, helping to change and shape healthcare. I am also a Diana Award recipient. I am most involved with the following charities: I am Ambassador/Young Avenger for Together for Short Lives, the first Global Youth Ambassador for the International Children’s Palliative Care Network, Trustee of the Pseudo Obstruction Research Trust and Ambassador for Dreams Come True. I have attended meetings of the Children and Young People’s Health Outcomes Forum and worked with charities/organisations such as the Council for Disabled Children, Essex Coalition for Disabled People, Hospice UK, National Council for Palliative Care, National Voices, Think Local Act Personal, Transition Information Network, Ehlers-Danlos Support UK and ehospice (and more). Most of my work is within healthcare, the vast majority of my work being on the subjects of the transition period between children’s and adult’s services, children’s and young adults’ palliative care, care for young adults with life-limiting conditions, palliative and hospice care generally, planning for the end of your life and having a good death and about child and young adult health. I also undertake work about disabilities and have been lobbying my local MP for improved accessibility in my area for almost 5 years. My goal in life is to make a difference and to be a voice for those who cannot speak for themselves. I want to expand and grow my work, to increase the amount and importance (and reach) of what I write, to give more speeches and to make an even bigger impact. My assistance dog in training Molly and I also won the Friends for Life competition at Crufts (the world’s biggest dog show) by public vote in March 2014, through which I won £1500 for the charity Dog A.I.D. (who are helping me train Molly) who train pet dogs to become assistance dogs and raised awareness of the charity – Dog A.I.D. received 1 million hits in the weeks after our win. I recently also started working with Scope, the disability charity, and will soon start working with the Royal College of Physicians and the local CCG and maybe even write for the Huffington Post. I am always trying to make a difference and help others.
However, now I need help myself. This is why I am writing to you. I am mostly bed bound except for short periods in my wheelchair, but my current wheelchair cannot meet my needs meaning my already limited sitting up time is even more restricted. Due to my condition, when I sit up the blood pools in my legs meaning not enough blood gets to my brain. The longer I sit up the more incoherent I become, until or unless I pass out completely. As a result I need a wheelchair which can electrically tilt, recline and elevate my legs, independently and all together to lay me flat, to allow me to sit up more and go out and to make me independent and give me total control and comfort. I will need to have custom, supportive, pressure-relieving seating and lateral supports due to my spinal curvature, lumps on my sacrum and coccyx, my hips which dislocate when I sit up and because I am prone to pressure sores. I also need a special function to raise my seat up so I am eye level with everyone else, so I’m not hurting my neck trying to look up to people and so that I can see over barriers, see over counters, reach things, cook, speak behind a podium and just have photos taken without everyone crouching down around me. In addition to this I need a framework and brackets on the back to hold my TPN rucksack, IV medication and pumps and my urine drainage bag.
As a result, I need a special custom made electric wheelchair to meet all of my needs. I have found a wheelchair company that make a chair that can be customised/rebuilt to meet my needs, which is the Permobil F5 Corpus VS (minus the standing feature as is standard in this model as I will not be able to use this). This is the only chair on the market that I have found in over 4 years of searching which can do everything I need it to, support me properly and make me as comfortable and independent as possible. This chair will change my life completely. As it would do all the things I need it to, be customised/custom-made and have specialist seating to support me and relieve pressure, I would be able to sit up far, far longer than I can now and be comfortable when I sit up – currently sitting up is a huge ordeal and is excruciatingly painful. I would have quality of life again, be able to resume my charity work, be able to go out more with my friends and family and go out for the day with my assistance dog in training Molly. I’d be able to run errands myself, go shopping, attend events and my hospital appointments (all in London) would no longer be a struggle. I could also possibly go on holiday (within the UK) or to events where I’d need to stay overnight as I wouldn’t end up needing to be in bed most of the time. Even just to sit in the lounge or garden with my family rather than being stuck in my bedroom in bed all the time would be a huge breakthrough.
I had a meeting with the company on the 24th July to discuss the chair and talk though my needs so they can go back and make sure it can do everything I need it to, which it can. I tried out the chair and it is perfect, it truly will change my life. It will be customised/built to suit my needs with all the support I need. Unfortunately, due to the highly specialised and technically advanced nature of this wheelchair, it comes with a hefty price tag of £22,412.39. There is no way I nor my family can afford this. Charitable grants are few and far between now I’m an adult with long waiting lists, if you are accepted, and would not cover the full amount. I need to raise the money to buy this wheelchair as soon as possible or I fear I will be completely bed bound again and have no quality of life at all. My life is so restricted anyway, my needs are always increasing and becoming ever more complex, and my care in inflexible, and the only way I can meet these needs and have a life rests with getting this wheelchair. As I mentioned, in all this time searching I have never found a chair that even comes close to this one. See photos of me in the chair and the chair by itself at www.gofundme.com/lucyschairappeal. I tried the chair again on the 7th August, and it handled everything so well, it was so comfortable even though it was only the demonstration chair and not make to my specifications, it handled a drive through the woods, it absorbed so many of the bumps, poor dropped kerbs and uneven pavements. It is everything I need it to be, and I need to raise the money as soon as possible to get the chair. Going out now is extremely difficult due to my current chair not meeting my needs. I need all the help I can get to raise the funds.
It will give me independence, comfort, freedom and quality of life. It will allow me to go out and do things for fun, but also go out and support others and help change and shape healthcare, improve services, help educate professionals and students/trainees (I aim to give talks at universities to medical students, nurses, social workers and health and social care students and to colleges generally to motivate, inspire and encourage students, break barriers for those with disabilities and raise awareness of issues the ill and disabled face) and make a difference in any way I can. I’d love to do more TV and radio work too, and it’d enable me to undertake work experience and courses. It will allow me to give more speeches, attend more events and meetings, do more filmed/recorded work and support others in the community. Once qualified as an assistance dog I’d also like to take Molly into schools, churches, groups, hospices and care homes (etc.) and give demonstrations, show off her tasks and tricks and allow people to fuss her and and for them to talk to me, and to generally give talks and demonstrations to raise awareness of assistance dogs and awareness and funds for Dog A.I.D. (who are training me to train Molly) as well as to show what dogs can do. It would also allow me to get back into education, even if only with the open university, (I’d like to study Psychology and Counselling, or possibly Health Sciences). It will allow me to do more, make a bigger difference, aim higher and will change my life beyond all recognition. It will make me more independent (in terms of mobility), allow me to support others face-to-face including chronically ill, life-limited/terminal, those on TPN or having/have had a stoma formed, those with disabilities and parents of sick children, such as going to hospitals and hospices, or having people to mine (since it’s wheelchair friendly), and enable me to have a life and a ‘career’, even if only voluntary work/charity work/working with organisations/colleges/universities/groups, giving speeches and demonstrations and increasing the amount, importance and reach of my writing, doing it on a more professional basis and with a wider reach.
I was wondering whether you would be prepared to make a donation towards the cost of the custom Permobil F5 Corpus VS wheelchair. You would be giving me the biggest gift of all, the only thing we can aim and hope for, which is quality of life. My independence would also increase exponentially. My lifespan will be limited, how long I have nobody knows, and I am in receipt of palliative and hospice care. Each day is a gift and all I can do is enjoy every moment I get and make the most of it. By making a donation you will enable me to live my life and not waste even a moment of my (limited) time. All I want is quality of life and you have the power to give me this. Equally as much, publicising my appeal, sharing the link to the fundraising account www.gofundme.com/lucyschairappeal on your website or social media, organising a fundraising event or doing a challenge, or at the very least coming to meet me or me to come to meet you to talk through the chair or sponsoring my work in other ways, anything will be gratefully appreciated. For companies/charities/individuals with a logo/website, in return you could have your logo and link advertised on my website (130,000 views in 2 years and a following from all over the world), I am happy to write pieces for you, speak at events, attend meetings and appear in videos, recordings and in the media.
I was wondering whether you would be prepared to make a donation towards the cost of the custom Permobil F5 Corpus wheelchair or organise a fundraising event in aid of me being able to get this wheelchair. Or even just share my link or send me your fundraising ideas! You would be giving me the biggest gift of all, the only thing we can aim and hope for, which is quality of life. My independence would also increase exponentially. My lifespan will be limited, how long I have nobody knows, and I am in receipt of palliative and hospice care. Each day is a gift and all I can do is enjoy every moment I get and make the most of it. By making a donation you will enable me to live my life and not waste even a moment of my (limited) time. All I want is quality of life and you have the power to give me this. For companies/charities/individuals with a logo/website, in return you could have your logo and link advertised on this website (130,000 views in 2 years and a following from all over the world) and I am happy to write pieces for you, speak at events, attend meetings and events and appear in videos, recordings and in the media. You can download my appeal letter and poster here – https://www.dropbox.com/sh/wyxshwakf7tixyk/AADeZspRIqOyJshUKKqU-dyRa?dl=0. You can read more and see photos of the wheelchair at www.gofundme.com/lucyschairappeal
Please consider making a donation towards my wheelchair and giving me the gifts of quality of life, comfort and independence. You would be changing my life beyond all recognition. In return I would be glad to do what I’ve mentioned above, or anything else you think I can help with. At the very least an advertisement on my website, endorsements on my Facebook page, my offer of speaking at events and meetings and/or any media coverage you would like. I will be eternally grateful. Without this chair, my life and quality of life will grind to a halt.
Thank you for taking the time to read this. I look forward to hearing from you.