Team Eva's medical fund

My name is Ruth Farrell Gilhool. I along with friends am raising money to help 14 year old Eva-Jane Lennon daughter of Margaret Lennon, get the urgent medical treatment she needs in London. Eva currently needs a wheelchair most days when she goes anywhere outside her home. Has she been in a wheelchair since the age of walking? Was she in an accident? No, is the answer to both of these questions. We live in Ireland but Ireland does not have any treatment available for Ehlers Danlos Syndrome and so far no one with this syndrome has been approved by the Irish Health Service for Treatment Abroad Scheme outside Ireland. In fact, the medical professionals in Ireland made it near to impossible to even get the diagnosis in the first place. A message Margaret sent to me yesterday "It was hard to hear how the Physio agreed with all in the report today and how desperate she was to help Eva when she cannot. She was so angry that no pain management of any kind had been offered to her. She told us of a child in similiar circumstances whose body became completely overwhelmed with pain and had to be brought by ambulance to Temple st where she spent 10 weeks. She was concerned that Eva is approaching that stage. "
 For the past few years, Margaret has been refused  a referral letter to a specialist for Eva to be tested for EDS. The medical professionals thought it would be a better idea to belittle Eva’s symptoms by saying she needed to exercise more, she was exaggerating her pain and that her mother was enabling her. These actions, or lack of actions not only caused the progression of EDS to escalate it crushed the spirit of this young girl to the extent she is almost a prisoner within her own body both physically and mentally. Eva was finally diagnosed without a medical referral by a rheumatologist in Cork this June as having Ehlers Danlos Syndrome and most likely other medical conditions.

I first met Margaret in 2012 and now consider her as one of my best friends; we have the nickname for each other of ‘Podpal’ since we are like two peas in a pod! We co-founded a Facebook page with two other mums in February 2012 called the ‘DCA Warriors’. We give information and emotional support to parents in Ireland who have children with special needs and/or a serious illness. It is a busy page and all work done by the 7 admins is on a volunteer basis. It is the fastest growing support page for special needs in Ireland on Facebook.  Margaret has worked tirelessly both on and off the page to help parents in need. The children and their parents are our number one priority; all egos are left at the admin door.  

Eva was diagnosed with Asperger’s and Dyspraxia at age ten, privately.  Mid 2012, I got the chance to meet her for the first time. What an absolute little sweetheart of a girl. Average height and size with dark blond hair, who I could tell, after a few minutes of conversation, was a highly intelligent child. She offered to be a passenger in my car in case I got lost going to their house. At the time I didn’t think anything unusual about it and we had a lovely chat along the way. It was only later Margaret told me how surprised she was that Eva offered to travel with me in the car. I was the first adult she had trusted other than her parents and her uncle Mikey, as a result of being badly bullied by a teacher and principal in her primary school. That day, Eva cemented a place in my heart.

As we live in different areas in Ireland, there is normally a space of 3-4 months in between seeing Eva.  From phone calls and online conversations with Margaret, I heard Eva’s health was deteriorating especially in the last 18 months.  However, when I met Eva and the family in August, I was totally unprepared for the enormous change in this beautiful girl.  She is in constant pain that shows in her face, she struggles to try and walk on her own, her slow movements mimicking someone in their late eighties. Every cell in her body feels like it is on fire.  Being on constant alert for someone brushing up against her has increased her already high anxiety levels. From the lack of the proper supports in her secondary school and being told by educational and medical professionals she was stubborn, lazy and all of the symptoms were in her head have paid their toll on this child. She only communicates through her mum when in public.  That day as I drove the two hour journey home I cried the full way for the beautiful lost 14 year old girl who should be enjoying her childhood and is only the shell of a person trapped inside from pain, anxiety and depression.
The only shimmer of hope in both Eva and Mags’s life right now is by this fundraiser to get Eva the treatment she desperately needs.  Eva was recently assessed in London at the Hospital of St John and St Elizabeth by Professor Rodney Grahame. He recommends urgent treatment that is not available in Ireland. The cost of the treatment in London for Ehlers Danlos Syndrome is €30,000. This will not cure it but will make it easier to mangage and ease some of the constant pain.
The family is in dire financial circumstances due to having to pay privately for medical appointments not provided by the State or with outrageous waiting times. Please donate what you can and share this page so we can give a mum the gift of her daughter without pain and for a beautiful young lady to remember that there are those out there that care for her as much as the admins on the DCA Warriors page do. Please bring a ray of hope to bring her out of the darkness. Thank you from the bottom of our hearts, the admin team of FB group DCA Warriors