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On Thursday the 11th of May 2017 my precious child Lilly-Anna chose to leave this word. She was 13 years old. She was 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. Pain clinics, physio and often surgery are vital in management of symptoms. Medical professionals didn't have the awareness to make the links in her symptoms and diagnose her syndrome earlier. People couldn't see a reason for her pain. She didn't want to be perceived as weak or attention seeking so very quickly stopped talking about her pain. As with so many EDS warriors, the decision to internalise her suffering was the beginning of her mental health difficulties. 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 and after a long battle she was admitted to the CAMHS in-patient ward.. Had this come sooner it might have been enough to make a difference?
It was too late, Lilly-Anna had already made the decision to end her suffering.
As a family fighting for answers and support, we had two battle fronts.
1) Get EDS diagnosis and treatment.
2) Get psychiatric help from camhs.
The EDS services would tell us that they couldn't advise on mental health and vice verce. But by this point the two were intrinsically linked.
Our goal is to establish a charity with the support of the Ehlers-Danlos society that targets all children at the point of diagnosis and ensures they recieve the appropriate mental health support to prevent another child facing the same decision Lilly did.
Please help us to make this Lilly-Anna's Legacy.
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