Sunday 19 August 2018

'I love my severely disabled daughter but caring for her drove me to brink of suicide'

Mum reveals struggle to accept that her daughter wouldn't be like other kids and tells why a special garden could make a big difference

Leanne Traynor
Leanne Traynor
Leanne Traynor with her daughter Megan and husband Stuart in the garden they hope to convert for her
Megan, aged five, with her then newborn sister Hannah
Leanne Traynor with her daughter Megan and husband Stuart
Leanne and Stuart with children (from left) Stuart Jr, Lily, Hannah and Megan

Claire McNeilly

Back then the phone never stopped ringing. It was as if the whole world wanted to know about Megan Traynor, the little girl born with a rare brain condition that, among other things, rendered her blind.

But parents Leanne and Stuart from County Down weren't giving up... and they had hope in their hearts.

Medics in China were forging ahead with pioneering stem cell treatments unavailable in the UK and had reported success with other children like Megan.

It would be expensive -around £30,000 (€35,295) - but a lot of people were touched by the youngster's story and the donations flooded in. Then, in 2009, Megan and Stuart boarded a plane bound for 40 days in the Far East.

Leanne and Stuart with children (from left) Stuart Jr, Lily, Hannah and Megan
Leanne and Stuart with children (from left) Stuart Jr, Lily, Hannah and Megan

However, there would be no triumphant homecoming for the Traynors and, seven years on, Megan, now 13, whose condition is called septo-optic dysplasia, is still completely blind.

She can't dress herself, brush her teeth, use the toilet or sleep through the night. And she still needs round-the-clock care.

So many other things have changed, though, in the Traynor household over the past seven years. Megan now has epilepsy. She is also autistic, has a very severe learning disability and she suffers from regular seizures.

She has two sisters - Hannah (8) and six-year-old Lily - and a brother, Stuart, who will be two next month. She also lives in a house where State benefits are the principal income.

Megan has parents who no longer work full-time and who once went through the heartache of separation because they couldn't handle their situation any longer.

She has a mother who was so depressed that at one stage she walked to the edge of a river harbouring the darkest thoughts imaginable.

Leanne Traynor with her daughter Megan and husband Stuart in the garden they hope to convert for her
Leanne Traynor with her daughter Megan and husband Stuart in the garden they hope to convert for her

She had a loving grandfather who helped pay for her parents to get away for a desperately needed break abroad and died suddenly from a massive heart attack three days after they'd left.

And the phone doesn't ring so much these days...

"Not long after China, it became apparent that Megan wasn't doing as well as other children with her condition", said Leanne (32), who has been living in rented accommodation in Ballycruttle, near Downpatrick, since October last year.

"We didn't update anyone, partly because it was so personal and partly because people had helped us raise money for her treatment in China.

"We felt we had let everyone down. Even now people still ask us about China. It's hard to watch other kids who have come home from there and are doing so well.

"One child, a family friend, is reading, and I feel so happy for them, but I'm so jealous. It just doesn't seem fair."

Megan, aged five, with her then newborn sister Hannah
Megan, aged five, with her then newborn sister Hannah

It didn't take long for Leanne and Stuart (34) to realise that the experts at Beike Biotech didn't possess the magic wand they had been praying for.

"She wasn't learning things the way the other children were," explained Megan's mum.

"We thought we were terrible parents, that we were doing everything wrong. It was horrendous. She had started toileting herself after China, but she had a seizure and forgot everything."

Megan was ultimately diagnosed with epilepsy and was put on drugs which helped control the seizures, but, as her mother explained, their oldest child "still wasn't managing at all".

"Once Megan got a very severe autism diagnosis it became very clear that she wasn't ever going to be independent - she's always going to need a full-time carer," said the mother-of-four.

"She changed schools. She's now at the Glenveagh (special education) School in Belfast five days a week.

Leanne Traynor with her daughter Megan and husband Stuart
Leanne Traynor with her daughter Megan and husband Stuart

"Over the past seven years we've been coming to terms with the fact that she's never going to be like other children."

The pressure of having a daughter with special needs and three other demanding young children - one of whom was just a baby - finally got to Leanne on December 16, 2014.

"It was my birthday and my son was three months old," the former retail manager said.

"All the way through my pregnancy we'd been promised overnight and daytime respite, but it never happened.

"I actually went into labour twice prematurely because of stress, but after I was discharged from hospital the respite still didn't come.

"Stuart's paternity leave ended, so I was doing the nights, breastfeeding my son on demand and looking after Megan's toileting and night-time needs.

"Then I had to be up to take the kids to school because Stuart was at work, and then, by the time dinner was done, it was all starting over again.

"The baby was screaming all the time. I just cracked. I felt like a failure and a burden. I was in a very confused state.

"I just wanted to sleep. I couldn't take it anymore. I honestly felt like nobody was ever going to help us, like nobody cared.

"I went down to the pathway along the River Lagan and sat on the rails... I thought that my husband and kids would be better off without me."

A cry for help came via a post Leanne sent to an online support group for mothers with young children. One of the group raised the alarm and Leanne's best friend Roisin coaxed her away from danger.

"Stuart was shocked," Leanne said. He just didn't understand what was going on.

"As soon as that happened, he took some holidays from work and then he gave up his job as an internal accounts manager.

"Up until then one of the two of us had always worked.

"I wasn't sleeping at all. Stuart and I had been fighting because he was coming in and the house was a mess. I had a kid attached to my breast all day and I had to pick the kids up from school. Then I had another coming home from school with so many needs... he was getting a night's sleep and I was envious of that."

Two years earlier Stuart - who has advanced psoriatic arthritis, for which he takes the cancer drug methotrexate and has regular steroid injections - and Leanne had gone through a year-long separation.

"I went to England with the two younger girls and he stayed in Belfast with Megan," explained Leanne.

"We missed each other so much, we got back together.

"It sounds awful, but by splitting up I felt like I was protecting my youngest children because from the whole time that Megan has been born, right through, no one has ever considered those children.

"Prior to the separation, we begged for respite support from social services and from the disability team, but we got nothing.

"Up until a month ago we'd had no overnight respite for around 11 years. We moved here (from south Belfast) and we finally got it."

Leanne and Stuart were in Gran Canaria - their first real holiday since getting back together - when the tragic news about Stuart's father John came through.

"Stuart's parents had helped pay for us to go on holiday and they also offered to take the kids," recalled Leanne, who recently stopped volunteering for a local charity because of pressures at home.

"We had been there three days when his daddy had a massive heart attack in his sleep on July 31, 2013. He was 58. It was a massive shock.

"Obviously, we cut the holiday short. We've never got over it. Megan was really close to him. It was a huge upheaval for her. She still talks to him."

Leanne, who became a stay-at-home mum for the first time in June 2013, said that John's death also affected her other children "massively", especially Lily, who alerted other family members to what had happened when her beloved grandfather "wouldn't wake up" that morning.

Last October Megan suffered another setback when she fell at school, and that has prompted her parents to start a new fundraising drive for a specially adapted garden at the back of their Co Down home.

"Megan had a seizure and she ended up falling on concrete," Leanne said.

"She hurt her head and was taken to hospital. Thankfully, she was okay, but the incident freaked me out and I'm scared to let her play outside.

"After that happened we started to work on our garden, which is also concrete, and we hope to turn it into a proper space where Megan can play - that includes AstroTurf, safe garden furniture and sensory equipment.

"People have already donated some material, but a landscape architect who designs sensory spaces for children with disabilities told us that we needed to aim for at least £20,000 for a proper sensory garden.

"If we achieve our goal, we will have a white butterfly theme in Megan's garden because when her grandad died hundreds of white butterflies descended on his garden in Tyrella."

The couple, who up until recently always had one wage coming in, have been finding it increasingly difficult to make ends meet.

"We haven't been able to afford oil for six weeks - or even Hannah's school shoes," admitted Leanne.

"Neither Stuart nor I smoke, and Megan and I share a lot of the same clothes because we're the same size.

"But I've learned to be thrifty and I make sure that the kids never go without."

The Traynors are also finding it a lot more difficult to raise the money they need to help Megan than they did eight years ago before the credit crunch kicked in and chipped away at people's generosity.

"We organised a fundraising event last week and only four people turned up, which was really disappointing," Leanne said.

Donations can be made by cheque addressed to Megan Traynor; via PayPal (agardenformegan@yahoo.com), or by bank transfer to Megan's Halifax account (sort code: 110976: account number: 00789720)

The Samaritans  can be contacted by phone at  116 123. This number is FREE to call. The 1life Freephone  is available 24 hours a day at 1800 247 100 or text the word HELP to 51444. The 1life service is of particular relevance to people who are feeling very low, have had suicidal thoughts.

Belfast Telegraph

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