'I had to learn to be tough': Mum's fight for son's care led to massive community movement
As part of our Mums Who Inspire series, we sat down with Nikki Lynch, whose son was diagnosed with HGDD soon after he was born. If you have a story that you would like to be featured, email mumswhoinspire[at]magicmum[dot]com.
When hairdresser Nikki Lynch, from Kells, Co. Meath, drove to Cavan hospital to deliver her third child, she assumed that everything would go to plan.
In her early thirties with two healthy and lively children, she planned on being home the next day with the new arrival.
But within a matter of hours, Nikki and her husband Derek’s world was turned upside down.
“I just presumed that things were going to be fine," Nikki revealed when speaking to MagicMum.
"I had two healthy kids I thought I’d have no problem having another one. I was going to go in and come home the next day.
"In my head I had everything planned. And then your world is turned upside down within a matter of minutes.”
Throughout pregnancy, everything was healthy and normal.
Until, just a few hours after birth, Tom started shaking. “He looked like he was cold, he was shaking. We called in the doctors to have a look at him and they confirmed that it was abnormal movement.”
Believing that the newborn was suffering from seizures, he was kept in an intensive care unit before being transferred to Temple Street Children’s Hospital a week later.
After running countless tests, a sample of his spinal fluid returned with an extremely high level of protein, the highest the neurologist had ever seen in a baby.
Tom, they were told, was likely to be brain damaged. The family were sent home and told to watch the baby develop.
“That bit was very had,” Nikki said. “You’re watching for everything. If he moved, if he made a different sound, even in his sleep, I was constantly watching him.”
As the months passed, she started to notice that Tom wasn't hitting the same milestones as her two older children had. Despite being generally healthy, he still had feeding trouble:
“Feeding him was very difficult. He had silent reflux, which meant that his food was going down, then coming back up so far and burning him before going back down again.”
After months of tests, a muscle biopsy was taken and sent to labs as far afield as America and France. Tom was diagnosed with Hypertona and Global Development Delay (HGDD).
The genetic reasons behind Tom’s disorders have yet to be discovered.
“It could be years to before we know his exact diagnosis, or we could never know. We were just told to keep doing what we’re doing and get him as much physiotherapy as possible.”
In the public health system with Enable Ireland, Tom was entitled to one physiotherapy session a month. Nikki instantly recognised that this would not be enough.
“You fight, I had to learn to be tough. You have to talk back to the doctors. If you don’t speak up you’re left behind.”
After struggling to find appropriate services for Tom, Nikki says that the solution finally came in the shape of an RTÉ One programme.
“I was watching a programme one day and there was a little boy from Galway on it who was similar to Tom, he couldn't walk or talk," Nikki said.
"His parents were talking about The First Steps Clinic in Limerick that had apparently helped their boy along a lot.”
After getting in contact with the family in Galway, they made an appointment to have Tom assessed by Dr. Senthilkumar Periyasamy.
He was happy to work with Tom, seeing him for intensive therapy sessions four times a week.
The cost of the therapy, as well as the cost associated to partially relocating to Limerick, made Nikki realise that they couldn't do it alone.
Returning to their Galway friends, they kindly provided a step-by-step blueprint for fundraising. The named the charity Tom’s Walking Wish.
“We had a meeting to set up a fundraising committee, followed by a public meeting in Kilskyre hall. We told our story and what Tom needed. It just took off from there.”
Thanks to the rallying of the local community and the tireless efforts of the committee, they raised €216,000 in eight months, twice the amount of their €100,000 target.
“It was just fantastic,” Nikki said. “People started setting up their own fundraisers. There was nearly two or three things on every weekend.”
The biggest highlights of the campaign included a Nathan Carter concert with all proceeds going towards Tom’s Walking Wish.
It went worldwide, receiving messages of support from Australia and America, as well as celebrity attention from the likes of Bressie.
Nikki says that she was blown away by the community spirit. “It was amazing the amount of people that came together. Even people we didn't know willing to help.”
Tom is now making progress with physiotherapy in Limerick. Nikki now takes Tom out of school on Tuesday afternoon and drives the three hour journey from Kells to Limerick.
She says that Tom doesn't yet have an understanding of the amount of work that others have done for him. In the hope of one day telling him, they’ve kept every newspaper clipping and article.
Nikki balances commuting to Limerick with her home life and the two older children with help from the extended family. She says that the older children, Charlie, 10 and Lucy, 8, have a great bond with Tom, "they never leave him out".
Today, Tom is making slow and steady progress, but their work is far from over:
“We’re making progress he’s not regressing. They’re happy enough with him. He has to be taught everything. Once you tell him, he’s got it.”
Despite her incredible work, she doesn't see herself as an inspiration: “People say you’re an inspiration but I think if anyone was put in any situation you would do it for your own kids.”
And her advice to any family in a similar situation?
“Definitely fight. There is always somebody out there to help you.
"Even if you don’t get it from the system, the services I find I didn't, there’s always somebody else. There’s always someone who will help. We were very nervous to ask for help. When our friends said no, we’re starting this and we need this.
"Only for it, we wouldn't be here.”