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STRONG Parents of 'miracle' boy tell of gratitude to doctors, carers and charity Jack & Jill

'If you compare him to the first year he was not moving his arms – He has improved well'

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Thelma and Juliano with Bryan and little Stephanie.

Thelma and Juliano with Bryan and little Stephanie.

Thelma and Juliano with Bryan and little Stephanie.

When Juliano and Thelma Matos Eccebarria went for a pregnancy scan for their first child, they were given the devastating news that their baby boy was unlikely to survive after arriving into the world.

Further testing revealed that the doctors feared their boy would not live even a day after being born.

Their son Bryan is now two years, eight months old – and continues to make meaningful strides to the delight of his family and the medical profession alike.

In recent months, he has started to play ball with his dad and call his mum for the first time.

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Juliano with Thelma and their adorable children.

Juliano with Thelma and their adorable children.

Juliano with Thelma and their adorable children.

Born with a severe neurological disorder, the little boy faces multiple challenges but continues to make progress thanks to supports, therapies, and his own determination, said his loving dad, Juliano.

“Bryan now is in good form. His progress is doing very well. But the first words from doctors were saying Bryan would not survive for one day,” he said.

“We started a very difficult life that day. He was the first son. Myself and Thelma waited for Bryan for a long time.”

He added that when they were first given the news that their boy had serious medical issues during their 24-week scan, “I remember how Thelma said: ‘I will still give him love because I feel him move. I feel him alive’. And that’s what we did. But it was a very hard time, you cry a lot.”

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Bryan can do more and more as time passes.

Bryan can do more and more as time passes.

Bryan can do more and more as time passes.

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Despite medical fears, Bryan is now making good progress and the family recently welcomed his little sister Stephanie (one month) into the family home in Gort, Co Galway.

And each new milestone the toddler reaches brings joy to those around him. As well as the medical team who support the boy and his family through specialised care, physiotherapy and speech therapy, they say the support services provided by charity Jack & Jill has been of huge benefit.

The charity currently supports almost 400 young children and their families nationwide. It provides nursing care and respite support for children up to age six in the family home.

Originally from Brazil, Juliano and Thelma moved to Ireland 17 years ago and fell in love with the country.

“I love Ireland,” said Juliano. “I love the weather. Brazil is very warm and I hate heat.”

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Bryan can do more and more as time passes.

Bryan can do more and more as time passes.

Bryan can do more and more as time passes.

They settled in Gort and four years ago they married and set out to start a family.

“When we discovered she was pregnant we were very happy,” said Juliano. An early scan revealed they were having a little boy and all appeared fine. But a further scan showed the little boy had severe neurological issues.

Despite carrying out numerous tests, they don’t know for certain what caused Bryan’s disorder. Juliano would look up possible causes on his computer in a bid to learn more. It is not uncommon for children like Byran to have undiagnosed conditions.

He spent two months and ten days in ICU before his delighted family was able to bring him home. And while his issues are ongoing, for instance he is not yet able to walk and can sit up only with support, he’s getting stronger. And despite having no speech before now, he has started to say the word ‘mum’ and is well able to communicate with his family.

“He can improve day by day,” said Juliano. “If you compare him to one year ago... the first year he was not moving his arms. Now he has all the control for his arms.

“I throw the ball for him and he throws the ball back for me. He has improved so well. He’s a very happy boy. He’s laughing all the time. He smiles all the time.

“He has good communications, he tells you what he wants and what he doesn’t want. He’s very determined.”

The couple now care for him full time and doctors are pleased with his progress.

“He started growing and he surprised all the doctors,” said Juliano. “We have a great team. We have 17 people including the doctors, nurses, physio, speech and language, myself and Thelma. And he has improved so well.” They benefit hugely from the support care of Jack & Jill nurses, who are like family not just to Bryan but to the rest of the family also.

“I say thank you God every day for Jack & Jill. The hours give a lot of support to us for everything. Everyone I meet, from Brazil or from Ireland,

I talk about Jack & Jill,” he said.

Children’s charity Jack & Jill is asking members of the public to raise funding to support families in their community. Like many Irish charities, it has been impacted by the pandemic.

From bake sales to fun runs and sea dips, Jack & Jill is asking families, friends or workmates to get involved and make the most of the last few weeks of summer with a fundraiser in support of a great local cause.

Every €18 raised funds an hour’s vital home nursing care for a family in your county and all money raised locally, stays locally. For further information on how you can get involved, log on to:

https://www.jackandjill.ie/events/summer-community-fundraising/

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