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, The Lindo Wing at At Mary's and Queens Square Neurology.
Zondra has a rare connective tissue disorder , Ehlers Danlos Syndrome and also suffers from a host of secondary disorders, from Chiari Malformation, craniocervical instability and atlantoaxial instability,  POTS , autonomic dysfunction , gastropaersis, Myasthenia Gravis .

Most of these conditions could only be diagnosed in the UK by EDS specialist as diagnostic testing was not available here in Ireland.
All of this is self funded costing tens and tens of thousand and is helped so much by fund-raising.

Due to these various conditions 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 3 months. 
Her heart rate is also severely effected and is on a lot of medication to help control it.

Her health condition has deteriorated so much since christmas 2012, she had 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 had lost 21 Kilos in weight and is on home oxygen, pain management and she has to self inject other injections at home. She is given nursing care at home with a pump through her stomach for fluids.

There is no specialist in Ireland and the Government will not cover anything on the treatment abroad as Zondras consultants work privately in hospitals in London. This does not meet the criteria for 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 countless 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.
In June 2014, an upright mri revealed that Zondra has a Chiari Malformation at the base of her brain.

The only treatment for this is brain surgery and we got the news recently we are now faced with having to travel even further afield to America or Barcelona to go to the experts to operate on this condition with EDS.

A posterior fossa decompression and cervical fusion from c0-c4 possibly c6 is what's been advised. The neurosurgeon said without surgery her condition will progress and brainstem compression is so advanced.

Right now it's just a matter of time. Again we will be faced with huge medical bills up to and over €100,000 for this.

We are not fund-raising at the moment for this as operation has not been confirmed nor booked as we will fight tooth and nail to get some cover first.

Meanwhile the specialists have been tryng to manage her heart and Vascular system and gastrointestinal system which are severely effected by Ehlers Danlos Syndrome.

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. Her doctor said she was a dying girl. Look at her now she has come a long way. At the end of that 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 since but the hospital appointments are weekly.
We face back into every new year with trips to London that continue throughout the year.

This is all thanks to fund-raising efforts and sponsers.
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 most importantly her life, a gift so precious.