Children are dying! Every penny will be targeted where it is so desperately needed to prevent this happening.
On Thursday the 11th of May 2017 our precious child Lilly-Anna chose to leave this word. She was 13 years old, a gifted musician, equestrian and twice a Scholar. She was the most polite, considerate and undemanding child you could meet. She carried her suffering with unrivalled grace and dignity to the end.
Lilly's pain started when she was nine years old and she was finally recognised as having Ehlers-Danlos Syndrome five years later... only 5 weeks before she left us.
EDS is an invisible illness that affects the collagen gene. There is no cure! Collagen is the bond in all of the bodies tissue so EDS patients suffer from a range of multi-systemic problems. Imagine you head being to heavy for your neck to support. Migraines because your brain isn't supported. Losing the ability to run, play sport or sometimes even stand because your ligaments cant hold your joints together and everything dislocates under any pressure. Sickness or pain and constipation every time you eat because your body cant push the food through your digestive system. Fear of eating at all because sometimes your throat isn't strong enough to swallow and you choke. Exhaustion that means you just don't have the strength to get out of bed some days and insomnia because the chronic pain you feel increases the adrenalin in your body and wont let you rest. What if you were terrified to sneeze because it both dislocated your ribs and caused nose bleeds. There are many many more symptoms but these are some of Lilly-Anna's.
Now what if you were 12 years old, with all of the above and everyone was telling you that you look fine so there cant be anything wrong... You are just clumsy and hormonal? A teen with growing pains that are normal. People couldn't see a reason for Lilly-Anna's pain. She didn't have a diagnosis and didn't want to be perceived as weak or attention seeking so very quickly stopped talking about it. As with so many EDS warriors, the decision to internalise her suffering was the beginning of her mental health difficulties.
The average time for EDS diagnosis is 5 to 10 years! Pain clinics, physio and often surgery are vital in management of symptoms. Counselling and awareness and understanding are vital for patients and the people around them to avoid the stigma of an invisible illness, the anxiety caused by the pain receptors telling the body to constantly release adrenalin and the depression that long term suffering causes.
Lilly-Annas pain started when she was 9 years old. By 13 years old, Lilly-Anna was finding it impossible to cope. Her visible symptoms had rapidly increased. Her EDS was finally recognised by a consultant only 5 weeks before she gave up her fight. It was too late. Lilly-Anna had suffered too much for too long and her mental health difficulties became the primary concern.
As a family fighting for answers and support, we had two battle fronts.
1) Get EDS diagnosis and treatment.
2) Get psychiatric help.
The EDS services would tell us that they couldn't advise on mental health and vice verse. Health and Mental Health are two different departments. But by this point the two illnesses were intrinsically linked. You couldn't improve one without the other.
Lilly-Anna's family are proud of the grace and dignity with which she carried her self to the end. We understand and respect her decision stop coping. We are heartbroken by the loss and by the knowledge that other children are in the same position. A child should NEVER be faced with that decision to make. No child should be in the position my baby Lilly-Anna was and yet even that week she wasn't the only young person in England, to carry out that same decision for those exact same reasons. Children's brains are growing and the pathways made are set by hormones in the body. Chronic pain in children causes long term mental health problems and high suicide rates.
Our goal is to establish a charity which, with the close links to and support of other EDS and mental health organisations, will raise awareness to enable earlier diagnosis and target all children at the point of diagnosis to ensure they receive the appropriate mental health support before its too late.
Please help us to make this Lilly-Anna's Legacy.