Family launches fundraiser to help fund life-saving treatment for toddlers with complex needs

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The family of toddler Caleb O’Loughlin have launched a fundraiser to help get the 16-month-old the life-saving treatment for his additional needs.

he young Limerick boy with scoliosis is currently being assessed for autism, occult spina bifida and tethered cord syndrome.

“We had a traumatic birth, Caleb was born with the cord around his neck but they told me at the time that he was fine, didn’t need any intervention and would be a happy and healthy baby,” mother Donna told Sundayworld. com.

Since he was less than two weeks old, the smiling young boy has been hospitalized and discharged for various reasons during his short life.

“When she brought him home from the hospital and at 10 days old, he stopped breathing and his lips turned blue.”

“I took him to the hospital and they said I was overfeeding him. It kept happening, and it got worse, so I called in a private pediatric consultant.

It was then that Donna learned that her son had a cow’s milk allergy, but other than that she was reassured that he was fine.

Months later, in June 2021, Donna noticed that Caleb was unable to respond to her.

“I thought he was deaf so I gave him a hearing test and it was clear,” she explained.

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Caleb with his parents Donna and Joseph and older brother

Caleb with his parents Donna and Joseph and older brother

When he visited the public health nurse for his 9-month developmental checkup, Donna said the nurse was worried because Caleb’s muscles were so stiff he might have cerebral palsy .

Due to his communication issues and communication issues, he was referred to a private neonatologist who evaluated Caleb by performing a brain MRI.

Donna told the consulting doctor about a muscle that had developed in Caleb’s back earlier this month. Fearing it was just his posture, he agreed to take a look at it during the scan.

“At this point he couldn’t sit up, he couldn’t hold his head up, he couldn’t crawl, he couldn’t do anything, he was like a newborn baby,” Donna said.

She was told again that her son was fine.

“The MRI results ruled out cerebral palsy and spina bifida, he said to me, ‘It’s perfectly clear, Caleb is 100 per cent fine’.”

“I said ‘well the public health nurse is worried about him’ and he said to me ‘the only thing wrong with your son is your anxiety’.”

“He said that was all that was wrong with him, if you leave him alone he will be fine.”

Donna, who suffered from postnatal anxiety after Caleb’s traumatic birth, was surprised by the doctor’s comments.

“When he told me it’s all in your head, you’re making your baby sick, he sent me into a worse depression, I had never had depression in my life until then.”

“I started thinking ‘there’s something wrong with me’ and went to see a therapist who told me there was nothing wrong.”

In August 2021, Caleb again underwent a developmental check and once again was unable to pass any of the tests.

“If anything, he was worse,” she said.

“He wasn’t babbling, he was making terrible noises with his throat, like a growl.”

At this point, she thought he might have autism, and he was referred once again for another evaluation. During which Donna learned he might have scoliosis. At this point he was again referred, this time to Crumlin Hospital for a spinal examination.

After being told they would be waiting two years for the evaluation, the family were again forced to pay for a private x-ray where the diagnosis of scoliosis was confirmed, but the doctor thought there might be more to it. wrong with him.

“He could only use one side of his body for crawling, and after months of physical therapy he should have gotten better,” Donna said.

“The doctor told me ‘I think he might have tether cord syndrome’, when I told them the previous MRI ruled out cerebral palsy and spina bifida, he said:” No Donna, we can’t rule that out because Caleb is too young to rule it out.

Shocked by the news, Dona set up a Facebook page called ‘Caleb’s Journey’ to help raise money to get her young baby for another private MRI scan.

“I was trying to get help to get this MRI done faster because I wanted to find out what was wrong with Caleb and get him the help he needed.”

“Then I started the GoFundMe because things cost an obscene amount of money, going to all these appointments and he needs therapies and interventions and everything.”

When she noticed her son was starting to have spasms, she took him to the hospital (the same one who told her Caleb’s MRI was clear) where she was told he was ‘just excited and that he had to be taken home. Worried after the spasms persisted, she took him to see a consultant in Dublin for a second opinion.

“He knew something was wrong, so he referred me to a Temple Street doctor.”

At the Temple Street appointment, the doctor looked at little Caleb’s MRI and told Donna that the back of her son’s brain was thinner than the rest.

“He said ‘but what really worries me is the amount of significant brain damage Caleb has’, so I looked at him and said, ‘What are you saying about brain damage?'”

“He said ‘you know from the MRI he has brain damage’ and I said no, I was told that was clear.”

Fearing that he might have a genetic condition, Caleb, Donna and her husband were ordered to have blood tests to see if they could determine if he had a condition, and if so, which one.

“We’re still trying to keep the GoFundMe going because now we have a worse situation, there’s no cure for Caleb’s brain damage.”

“If I raise 100,000 I can guarantee by this time next year it will be gone because Caleb’s needs are huge.”

You can donate to O’Loughlin’s GoFundMe here.

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