Zondras Treatment Fund
Thank you to everyone who has supported Zondra so far in getting to London for vital specialist medical care in the hospital of St Johns and St Elizabeths and Queens Square Neurology.
Zondra has a rare connective tissue disorder , Ehlers Danlos Syndrome and also suffers from a host of secondary disorders, POTS , autonomic dysfunction , gastropaersis, Myasthenia Gravis.
She has also just been diagnosed with a brain disorder called Chiari Malformation and atlantoaxial instability.
Due to this she suffers from Tacs which are the most painful condition known to medical science.
She is treated with up to 40 injections in her skull every 4 months.
Her health condition has deteriorated so much since christmas 2012, she has been living her life in and out of hospital, where all the local hospitals and doctors can do for her is manage her pain with morphine.
She has lost 17 Kilos in weight and is on 48 tablets a day, oxygen, pain patches, morohine, she has to self inject other injections at home. She is given nursbut care at home with a pump through her stomach for fluids.
There is no specialist in Ireland and the Government will not cover this on the treatment abroad scheme.
Zondras doctors in Ireland are fantastic and work very hard to help her but she needs the specialist care and would not have come as far as she has now without it.
Her doctors here now liase with doctors in London to help care for Zondra.
Due to fundraising zondra has now been to see the specialists in London , multiple times since January 2014.
In Janurary 2014 the doctors in London said her condition was critical and she needed to be admitted there asap . In April 2014, she became so unwell there she was sent straight to urgent care.
The recent hospital visit to London in June 2014, revealed that Zondra has a Chiari Malformation at the base of her brain.
The only treatment for this is brain surgery and we will be faced with having to travel even further afield to America to find the experties to deal with the complexities of Zondras condition. Right now Zondra has been told she would not survive any surgery as she is too weak.
Meanwhile the specialists are tryng to manage her Vascular system and gastrointestinal system which are severely effected by Ehlers Danlos Syndrome. Its been two years with out proper meals and on 8 antisickness tablets a day.
It is very hard to watch someones health deteriorate so much, but everyones help is giving us hope that we can fight this and come out the other side.
Zondra Just wants some quality of life so she can enjoy it with her son and we are so grateful to everyone that is fighting to give her that chance.
The doctors in London are working so hard to help her in the next step of treatment.
She is a massive fighter. On the very last day of January 2015 Zondra collapsed and was taken by the cardiac response ambulance into resuscitation for two hours. The doctors said they worked very hard to save her. But they did. At the end of February she was discharged on palliative care , very weak but ready to get better.
With the new care plan in place at home this allowed zondra to spend more time at home this year but the hospital appointments are weekly.
We face back into a new year in 2016 and Zondra is starting hers with 6days in London for consults and treatment.
We hope this year will be her year
We apprecite all help we can get and thank you for all the support on Zondras behalf.
It has made all the difference and helped give her hope and life, a gift so precious.
In light of this I am sharing this documentary I made with my friend Richard Lynch, on Ehlers Danlos Syndrome and the secondary conditions I and others have because of it.
It shows the specific impact it has on my life.
Two years later and nothing has changed I am still fundraising and traveling abroad for care, 5 times last year 2016.
This time next week I'll be starting into a third year of travelling to London again for care.
This is a harsh reality for some of us patients here in Ireland.
Please watch and share to raise awareness of this condition.
Last year I was a week in London having all types of brain scans and treatment when we woke up to the news of David Bowie's death.
Ive been fundraising for three years this month.
Ive traveled to London over 15 times and have had tests and treatments only available in the UK that have diagnosed me with not only Ehlers Danlos Syndrome but a brain disorder called Chiari and Cranio Cervical instability, Autonomic Dysfunction a major issue with my autonomic nervous system , these cannot be diagnosed in Ireland and Gastropaerisis which is paralysis of my stomach. I've major cardiac issues.
The last three years have seen me not been able to eat and go to 6 stone, have a cardiac crisis , been resuscitated and put on palliative care, put in a specialist spinal wheelchair for my neck and skull to where I am now.
I travel every three months to London for treatment with my Neurovascular Consultant at the Lindo Wing in St Marys Paddington, my Neurologist for 40 cranial injections in Queens Square Neurology and Neuro gastroentrologist , specialist rheumatologist in St Johns and St Elizabeth's in John's Wood.
We fundraise before every trip as the costs are so high and are not covered by travel abroad scheme as all consultants work in a private hospital.
My next trip is the end of this month and is close to €10,000 when converted from sterling.
I've a kink in my brain stem and its causing massive problems with my heart.
The only upright MRI is available in London I had one done in June 2014 but it needs to be repeated again to see if it has gotten worse as I've been putting off the surgery I need but if my brain stem is very compressed I cannot hold off much longer.
I am yet again filling out my treatment abroad scheme form with my consultant in Ireland in the hopes something will be covered but as they do not cover private care abroad I'm sure I'll have another rejection letter added to the stack before.
Thank you to everyone involved in this. I have a young son every treatment every three months is so vital to keep me at home with him. Every thing helps so much peoples generosity is amazing and has kept me going for this long and I've come so far.
Thank you beyond thank you,
Z x x
Its been a hard two weeks for me unfortunately but all the support keeps me going
Thank you Zondra for all your support and help to me for my daughter Eva. It is because of people like you I have been able to get the information I need to help her. I wish you so much happiness and and please God good health ♥
I have €25 for you from the instrument making class at Limerick school of music. They had a swear jar and have donated the contents of it