1 in 4 children applying to charity Dreams Come True suffer from rare diseases
Rare Disease Day on 29th February seeks to get people’s voices heard
London, 26 February 2016: Over the last 26 years, children’s charity Dreams Come True has fulfilled the dreams of more than 5000 children and young people with serious and life limiting conditions. 24% of dreams fulfilled in 2015 were for children and young people with rare diseases. Over the last 10 years the charity has consistently seen over 20% of the children and young people coming to them for dreams suffer from a rare disease.
The charity is also seeing a wider variety of conditions than before. More and more people with rare diseases are living longer, putting extra demand on medical and healthcare.
Peter Newman, chief executive at Dreams Come True, said, “We are all living longer, even those with life-limiting rare diseases. For these young people, it is not just about providing medical support but there is also a need to help them to live better. The resources and expertise of the charity sector and community groups should be more widely accessed, alongside health and social care provision, to ensure everyone who needs support, no matter what age, are being provided with the opportunity to live better. We believe passionately in the power of dreams to inspire, motivate and empower.”
Peter adds, “Dream experiences gave families a chance to create memories they can cherish for a lifetime. It allows families to escape from the challenging daily routine of an illness and spend quality time together. It can be the simple things such as a weekend away in a Cornish cottage or a specialised bike.”
One of those young people is 22 year old Lucy Watts MBE who is now and ambassador for the charity and vocal advocate for improvements to palliative care and raising awareness of her own rare disease to help support others who are going through similar experiences. Having her dream to meet Paul O’Grady fulfilled at 21, Lucy has a genetic disorder called Ehlers-Danlos Syndrome with life-limiting (life-shortening) complications, which has left her wheelchair bound since she was 14.
“My quality of life is restricted, hooked up to intravenous drips almost 24 hours a day and I am mostly bed bound, however I have a specialist wheelchair to enable me to spend as much time out of bed as I can, which most days isn't a lot but some days can be all day such as for an event in London.”
“At 22 I have achieved a lot, however I have hobbies, interests, hopes, dreams and goals just like any other young person my age - I just have enormous obstacles to overcome to partake in my hobbies and to realise my dreams. I do not let my conditions or disability hold me back; they limit my ability to do many things and lead a 'normal' life, however I work with what I can do and push the boundaries where possible. It's not often I am defeated, as I am realistic about what I can do and do that to the best of my ability.”
One of the children living with a rare disease and currently waiting for his dream to be fulfilled is 13 year George from Kent who dreams of visiting Africa.
Living with a rare blood condition, George has a number of significant difficulties to face at such a young age. The condition, called Diamond Blackfan Anaemia, means his body doesn’t produce red blood cells properly, causing him to have blood transfusions on a regular basis.
These frequent trips to the hospital for blood transfusions are a lot for George to deal with and leave him feeling exhausted. But, he does not let this hold him back and he loves to go on as many adventures as possible.
What bigger adventure to go on then to visit one of the most spectacular, vast and diverse continents on the planet? George has always been fascinated by the wildlife in particular in Africa – his favourite animal is the chimpanzee and would like to visit the chimpanzee sanctuary. Keen to learn and experience as much as possible, he would also like to meet an African tribe.
George said: "A holiday to Africa would complete my life and it would be really good family time because my dad works away and leaves for work very early and gets home really late which means I don't get to see him often. When I am in hospital, I don't see my brother so if we went to Africa, I would be able to spend lots of time with them. Thank You."
To donate to Dreams Come True and help make dreams like George’s come true, visit www.dreamscometrue.uk.com.
About Dreams Come True
Dreams Come True is a national children’s charity serving the whole of the UK. Our mission is simply to make dreams come true for children with serious and life-limiting conditions.
Over the last 25 years we have brought happiness and joy to more than five thousand children as well as their family and carers.
That every child or young person with a serious or life-limiting condition has the opportunity to fulfil a dream.
Registered as a Charity in England and Wales (800248) and in Scotland (SC043878)
For further information please contact:
Sian Hobday or Claire Williamson at Bright Bee on behalf of Dreams Come True:
firstname.lastname@example.org/ +44 (0) 208 819 3170
Author: Hannah Attenburrow
Source: Dreams Come True
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