HAPPY TOGETHER Maggie and little Frank as a toddler.
A campaign has been set up to help little Frank Wynne’s battle with autism
FRANK Wynne looks like your typical fair-haired four year old – golden blonde locks, a big pair of crystal-blue eyes and a smile so innocent even the coldest of hearts would be in danger of warming.
For his parents, Maggie Wynne and Shane Colohan from Ballina, their son is the darling of their lives and the very meaning of their existence, despite the challenges that parenthood poses.
What differentiates them from most other parents, though, is the sheer scale of the challenges they have already faced in Frank’s short time on earth, challenges they continue to face on a day-to-day basis.
Frank was born 17 weeks premature, weighing only 700 grams. At two-and-a-half years old, he was diagnosed with Level Three autism. The first eleven months of his life were spent in hospital, where he was given very little hope of survival.
Maggie and Shane eventually got to bring him home, three weeks before his first birthday – fragile, and dependent on feeding and breathing tubes, but very much alive. He has since been admitted back to hospital regularly with pneumonia due to severe chronic lung disease. He has also had to endure three surgeries.
‘He’s a miracle’
By all accounts, Frank’s survival past his first year is a mystery to medical experts, but his parents were never going to give up.
‘He’s a miracle,” his mother, Maggie, told The Mayo News. “He was born on the cut-off point for an abortion at 23 weeks, and they told me he wasn’t going to live.
“He was born in Castlebar, and they managed to save him before he was transferred to Holles Street [National Maternity Hospital]. By the time I got there the consultant came in and told me, ‘We’re talking about the quality of life here’.
“I was told that if he was born there [in Dublin] they would have let him pass away, so we fought from that moment to keep him alive, even though I was told several times to knock off the life-support machines.”
But, defying the greatest of odds, Frank survived. However, the next eleven months were ‘absolutely horrendous’ for Maggie and Shane, who, despite living in Mayo, made sure they were at their son’s bedside all the time for those heart-wrenching eleven months.
“It was like we were in this bubble in hospital, and the outside world didn’t matter,” she said. “I remember coming home one night just to try and get out of the hospital environment. I was sitting on my bed pumping milk when I got a phone call to say that both Frank’s lungs collapsed, and they didn’t know if he was going to make it.
“I jumped in the car with my mother, I couldn’t even wait for his father, and when I got there he was on a machine to try and open his lungs; he was ice cold and felt like a rubber doll when I touched him.
“I couldn’t stay with him because they were working on him so hard, so I went to my hotel and cried my eyes out. The doctors pulled me aside the next morning and said he had come through, but that he could be facing seizures, cerebral palsy, he may not see or hear, may never walk and could be on machines for the rest of his life, and asked me to turn off the life support again.
“But at that moment, I thought that whatever is wrong with him, I’ll care for him for the rest of his life.”
DOCTORS also feared that because of oxygen starvation as a newborn Frank may have an intellectual disability, but brain scans proved otherwise. However, his internal organs were affected, meaning when he did eventually return home his breathing needed to be assisted with a CPAP (continuos positive airway pressure) ventilator.
Getting home was a major milestone, but there were still so many hurdles that would need to be jumped.
“We were terrified because at the hospital you are surrounded by staff, but when you came home, although it was great to be able to cuddle your own baby on the couch, you had all these machines, and [you’re] thinking ‘What will I do if something happens?’,” she said.
“Like one night when he was on the CPAP machine and he vomited because he had a bug. The machine pushed the vomit back down into his lungs and he aspirated. I was home alone and waited 45 minutes for an ambulance to come.
“Thankfully I knew what to do, but if I hadn’t, who knows if he would be here today. We were sent home from Crumlin without a home-care package, which was wrong, but thankfully Early Interventions in Ballina helped us out in adjusting.”
Understanding his autism
When Frank was two-years-and-seven-months old, Maggie began to notice that he was’t progressing socially at the rate she expected. That was when he was diagnosed with Level Three autism. Because he is non-verbal, he weekly receives intense speech-and-language therapy, behavioral therapy and technology to help him communicate.
Maggie says the next year of Frank’s life is hugely important in terms of getting help.
“Early intervention is the key with autism,” she said. “It’s so important because the earlier you intervene with their issues, it goes a long way to shaping their future. With autism, they get used to their ways, and their habits are hard to break.
“Frank has had an obsession with the colour green since day one, and anything he sees of that colour he wants to hold – could be a football or a bottle of fairy liquid. It’s an obsession and already I can’t break it, so if I don’t intervene with the other things like bad behaviour, not being able to communicate, it will be the same.”
Due to his inability to verbally communicate with his mother, Frank is becoming increasingly frustrated and upset, which is now leading to him harming himself and others.
“Frank is highly intelligent and knows what he wants, and he has taken to his Amazon Kindle to show us sometimes, but when he can’t he has taken to biting out of frustration,” she said. “Last Saturday he took a chunk out of my chest. I mean I couldn’t even get stitches, it’s that bad.
“It happened because I intervened in him doing it to his own arm, which he has done already and left scars. He’s started banging his head off walls too and goes into such a world of frustration that you can’t comfort him when he can’t get out what he wants to say.”
THAT was a major turning point; Maggie realised that she needed help. She and her family have now set up a GoFundMe campaign, ‘Frank’s Fight’, to raise €5,000 to allow them to go private with Frank’s therapy for the next year.
From day one, the financial strain on them has been massive. The price of hotels and B&Bs in Dublin were huge, and with Maggie unable to work, she was refused a loan to help cover therapy costs.
The waiting lists for public help are too long, she explained, with Frank only receiving speech-and-language therapy three times last year. In reality, he needs ten hours a week of behavioral therapy, at €33 an hour, as well as speech-and-language therapy, which ranges from €80 to €100 a session. The family is also researching apps on an iPad that use pictures to help him communicate, but they could cost well over €500.
Family and friends have come together to help cover the costs for September, but Maggie knows that’s not sustainable. Now she has made the decision to ‘swallow her pride’ and do that thing no Irish person likes to do: ask for help.
“With the help of family we decided to do this, and it took every bit of strength to ask for help,” she admitted. “I was worried about what people might think, but then I thought, ‘You know what, this is for you son and you’re not doing anything wrong’.
“Hopefully it might make other parents aware and encourage them to ask for help too.”
And how is Frank after going through all this?
“He’s the smiliest child, with an infectious laugh, and he’s such a joy to be around,” she smiled. “No matter what machines are on him or needles in him, he’ll always smile.
“He’s far from innocent too! When you tell him ‘No’ he’ll laugh at you; he’s a real boy and has real devilment about him.
“It’s just seeing the frustration and upset that’s the heartbreaking part.”
Frank and his parents have been on one hell of a journey, but after hearing about their positivity and resilience, there’s no doubt they’ll emerge to better days.
To donate to the Frank Fight campaign,visit the website www.gofundme.com/f/frank039s-fight.