Weʼre raising £3,000 to help our Amazing Acacia cope with the extreme challenges of school & everyday life and to give her some independence over her own life.
- Flint, UK
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We are raising funds to help our daughter, our Amazing Acacia. At a young age, Acacia suddenly started to tire easily and seemed to be in a great deal of pain. She quickly deteriorated, becoming more and more ill. This resulted in many trips back and forth to the doctor, eventually being referred to Alder Hey hospital. After periods of hospitalisation, countless tests, bloods and yet more tests, she was diagnosed with Juvenile Rheumatoid Arthritis, Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome. She was 6 years old.
How can she look so well? She looks fine, I'm sure you're exaggerating! She looks very healthy! She is so clever! These were just some of the things we have heard over the years, as what Acacia suffers from are hidden diseases, and in regard to EDS, a syndrome the vast majority of people have never even heard of.
Since her diagnosis, Acacia's physical condition has deteriorated greatly, despite intervention from Physiotherapy. EDS and Joint Hypermobility Syndrome are two conditions that can never be cured, and are something the sufferer has to live with and try to cope with on a daily basis. She now lives with chronic & debilitating pain daily, but along with the pain, are many more symptoms she suffers:
* Every joint in her body is unstable & hyperextensible and she suffers partial dislocations on a daily basis in most joints, from her knees, ankles, hips, shoulders and even her jaw. * She has ridiculously soft, thin, almost transparent velvety feel skin with extreme elasticity that is very fragile, easily prone to being damaged, very slow to heal, easily bruised and she is left with long-term wide severe scarring. * Acacia constantly suffers with extreme muscle fatigue and chronic exhaustion which usually leaves her bed bound or sofa bound for days. * She has a whole range of digestive and urinary tract disorders, including heartburn, acid reflux, nausea, regular vomiting, severe abdominal pain, constipation and stress incontinence caused by problems with the muscles controlling bladder function & control. She is regularly hospitalised due to kidney infections. * Her eyes are extremely sensitive & easily damaged *She has severely poor dental health, including regular gum infections and no enamel on many of her teeth *Acacia suffers serious problems with her mobility and struggles to walk any distance due to pain and partial dislocations. She suffers from flat feet & misaligned bones in her toes & feet & shortened tendons & ligaments which mean she can only walk on her tip toes. *Acacia is unable to hand-write, draw or colour due to the severe & debilitating pain this causes in her hands & arms, and it also causes her wrists and finger joints to partially dislocate. *Acacia suffers from chronic sleep problems caused by pain & insomnia. She is lucky to sleep for 3 hours a night. This in turn leads to chronic fatigue & exhaustion and affects her moods. *She has Postural Orthostatic Tachycardia which causes her to have regular dizzy spells, regular fainting, palpitations, regular severe headaches, chest pain and shortness of breath.
Her quality of life is severely affected. She has no social life as she is unable to go out shopping with her friends, go to parties, sleepovers and trips out with her peers. She has been unable to attend any school trips, educational visits or residential trips. Acacia has never been able to participate in P.E in school. She has already missed out on so much and feels extremely isolated. This has resulted in her developing depression and anxiety.
After us campaigning and fighting the hospital for the last 2 years, Acacia has finally been assessed by Occupational Therapy. The meeting and assessment was a long process and the outcome is that Acacia needs significant disability aids & mobility equipment to help her live as normal a life as is possible for her, and to give her as much independence as possible as she continues to face the challenges of everyday life and schooling.
We have been given a huge list of these aids & pieces of equipment that are needed to support her. These include basic pieces of equipment which would allow her to undertake everyday tasks that we take for granted, such as a kettle tipper so she could make her own cup of tea, or her favourite Pot Noodle for the first time on her own, to a spreading board so she could make her own sandwiches. Simple things like a bath step, bath board and grab rails would allow her to, for the first time in her life, have a bath on her own, something important for the dignity of a 16 year old girl. Other items on the list, like the installation of a shower are extremely expensive but would give Acacia independence & dignity. The list covers everything from specialised pillows to help her sleep, a specialised mattress which has facilities to raise the upper or lower body section to help Acacia gain some semblance of comfort to try to allow her to sleep, a weighted blanket which has been proven to provide relief & comort, specially designed cutlery that requires no pressure or hand strength, to swivel seats and key turners, all of which will give our Amazing Acacia what she needs to live as normal a life as is possible for her.
Due to NHS funding cuts, all they have been able to supply us with are wrist splints which are vital to Acacia to help stop her constant wrist & thumb joint dislocations and a specialised chair cushion which she uses in school as the chairs & stools in school cause her severe pain. For these items we are extremely grateful as Acacia is already seeing the benefit.
During her compulsory education, Acacia has just finished her GCSE's and will be starting Sixth Form in September, as she is unable to hand write, Acacia was supplied with a school laptop from her school's ALN Department, during lessons for her to work on, and with the use of a memory stick, was able to bring all her work home to use on our desktop computer, where she could complete projects, coursework and other research and take her memory stick into school to print off her work. Unfortunately due to Sixth Form being non-compulsory education, the school can no longer provide Acacia with a laptop to use within school, and with it not being Higher Education there is no possibility of applying for the Disabled Students Allowance. This means that in order for Acacia to continue her studies at A-Level, which she dreams of as she aspires to become a Barrister, she needs a laptop of her own, along with Voice Activated Software for her to use. A laptop and the software would allow Acacia to continue her studies, without it, it will be impossible as she is unable to hand-write.
We are not entitled to DLA or PiP for Acacia so we receive no financial support to help her with her medical conditions. She has a Blue Badge so we are able to use Disabled Parking spots as she is unable to walk for very long periods, and this allows her to visit our local library as she loves reading, but that is the only support we are provided with. I am fundraising for her, to allow her to continue her studies, to fulfil her dreams & ambitions and most of all to give her some dignity, and independence. The aids & equipment will make such a massive difference to her life, and she thoroughly deserves the chance to live as full a life as she is able. She will never be able to attend concerts or festivals, never be able to go on a shopping trip with her friends and maybe never have the ability to leave home and live independently, but these things will make such a difference to her life.
Acacia is a true inspiration to everyone she meets. She has a smile for everyone, no matter what is going on in her own life, no matter how depressed or anxious or how much pain she is in. Her quality of life at the moment is extremely limited, she has no social life, and no independence. She is my hero, my inspiration to keep fighting for her and for further research into EDS.
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Hayley Todd started crowdfunding