A new crowdfunding campaign has been launched to help Ylena Lucy Green get the treatment she needs to save her life. She is suffering from EDS, which is a very rare disease that could lead to paralysis or death. Treatment isn’t available in the UK.
A crowdfunding campaign has been launched to help Ylena Lucy Green to get the surgery she needs, which is only available in the US or Spain. Ylena suffers from a connective tissue disorder called EDS (Ehlers-Danlos Syndrome), which affects all her joints and even her digestive system. It is a very rare disease, and if she does not have surgery soon, she could be paralysed or die.
Anyone can donate on the following link: http://just4children.org/children-helped2017/helping-ylena-lucy.
Ylena Lucy’s EDS also means that her neck painfully dislocates at even the slightest movement. She has already started to experience loss of feeling in her hands and legs. The specialist treatment she needs isn’t available in the UK, where she was born.
She explains that she has been sick for so long now that it’s easy to forget how things used to be. Before EDS kicked in, she enjoyed going on holiday, and doing cartwheels on Camber Sands in Kent.
She had a happy childhood, and grew up enjoying active pastimes. She loved swimming, bike riding, ballet, and playing in the park, living life to the fullest. She also enjoyed reading.
Now, the EDS makes it difficult to do any of that. It has affected her eyesight, so she can only read for short spells at a time. Ylena Lucy explains that one of the worst things about EDS is that it creeps up on the sufferer.
She said: “I know a lot of people have someone in their life that’s been ill for a long time, It’s never easy and if this is something you’re living with, I’m sure they love and appreciate you as much as I love and appreciate everything my parents have done for me.”
She added: “I love and appreciate all of you too. You all really mean a lot to me and I’m not just talking about the donations, for which I am truly thankful. I feel so lucky to receive your love and support. It honestly gives me the strength to keep going when I get really low. Thank you all, so much.”
Full details on how to get involved and ensure Ylena Lucy gets the treatment she needs can be found on the URL above. Additional details are available at: https://facebook.com/HelpingYlenaLucy
