Surrounded by her family, Zondra shows off her mother Dorothy’s Carer of the Year award in 2016
SIX YEARS ago, mother-of-one Zondra Meaney could walk her son Carrick to school, or leave the house on a whim to drive to town.
But since being diagnosed with Ehlers Danlos Syndrome (EDS) — a rare connective tissue disorder — in 2011, life for the 32-year-old Mungret woman has been “completely different”.
And for the past four years, Zondra has been working with a number of consultants and experts to help her with her associated EDS conditions — or comorbidities — between Limerick and London.
In June 2014, Zondra was diagnosed with a separate disease called chiari malformation, a rare brain disorder that causes fluid to build around the brain and the brain stem to become compressed.
While it is not an associated condition of EDS, a number of EDS patients have this condition, she told the Leader this week.
Since, she has had to travel to London every three months to receive injections for pain management for her “pressure headaches”.
However, in recent months, she has been told that she will require “very tricky brain and neurosurgery that only a few neurosurgeons in the world can operate”.
That is why Zondra’s family has set up a fresh crowdfunder to raise up to €100,000 for her to get surgery carried out in Spain.
So far, she and her family have raised up to €30,000 with matched funding from the public, for her treatment to date.
While she prepares for surgery, Zondra each day battles the associated illnesses of EDS. This includes atlantoaxial instability and cranial cervical instability, which in her case is the dislocation of the skull from the spine. And as a result, Zondra requires surgery to fuse the skull to the spine.
The former beauty therapist is also treated for autonomic dysfunction, a condition that forces blood vessels to no longer constrict. This means that when standing, the blood that flows down to the legs fails to pump adequately to the brain, leaving Zondra with dizziness and a high heart rate.
Zondra is also on three different types of medication to treat gastroparesis, which disallows food to pass through the stomach. This previously resulted in her losing 21 kilos of weight, she said.
And because her treatment in the UK has been private, she has been unable to avail of the European Cross Border Healthcare Directive. This allows patients to avail of public healthcare within the EU, where services are not available in Ireland. Just €2.2m was spent by the HSE in 2016 for this initiative.
However, she is hoping that she will be able to receive additional financial support ahead of her surgery.
“Because if I don’t, I don’t see how I am ever going to raise that money,” she said.
She said that she has been told that she has “no choice or alternative but to get the surgery done”, as the prognosis of her condition is either stroke, paralysis or dying in her sleep, she explained.
But she said that the support that she has received from family, friends and the public has been uplifting.
Her mother Dorothy, whom she describes as a “super woman”, gave up her job nine years ago to be a full-time carer for Zondra. Just last November, Dorothy, from Dooradoyle, was awarded the Family Carers Ireland national carer of the year award for her devoted work.
“I couldn't survive without her. She has given up everything to care for me and help me parent Carrick. She is brilliant and never complains,” she said.
And 10-year-old Carrick “keeps us both going”, she said. “He's a real character and he's what keeps me going every day. We keep the severity of my illness hidden from him as much as possible but I'm just his mam and he accepts just who I am. He is very empathic and caring child and that's a positive effect this all has had on him.
In 2011, Zondra’s friend Amanda Corbett died from vascular EDS, a more severe form of the EDS spectrum. Every year, the Corbett family host a memorial charity football match for Amanda, with proceeds going towards Zondra’s treatment fund. This event takes place again in three weeks’ time, Zondra said.
“Everyone in Limerick has been amazingly supportive. It’s allowed me to live my life at home, instead of a hospital, and as a mother, that is very important to me.”