Just weeks after giving birth to their youngest child, Reggie Bird received the news every parent dreads: “Something’s wrong with your baby.”
The two-time “Big Brother” star learned through a vague letter in the mail that little Lucas was ill – but she would have to wait two weeks to find out the specific diagnosis in person.
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The concerned mother managed to visit a practitioner earlier – and the “heartbreaking” news was confirmed to her.
Lucas was diagnosed with the incurable cystic fibrosisa genetic disorder affecting the lungs, digestive system, and reproductive system.
Reggie is now using her platform to advocate for more research and donations to one day bring an end to the “ongoing” disorder.
Just weeks after her youngest underwent a standard heel prick test – something all babies undergo – Reggie received some “heartbreaking” news.
“We found out in a horrible way — we got a letter in the mail,” she tells 7Life, adding that the letter simply said, “There’s something wrong with your baby.”
“Then I had a list of about 30 different diseases that included fibrosis, and I was like, ‘Oh no.'”
Reggie was familiar with cystic fibrosis and had a family friend who struggled with the disease.
“When they told us it was cystic fibrosis, it just broke our hearts,” she says.
“It’s a lung disease, but it affects the whole body – the sinuses, the liver, the breathing, the pancreas, the digestive system – it’s all awesome.
“There is mucus in the lungs, so they have to do physical therapy every day to try and remove it.”
Unlike most other diseases, people with CF “must stay away from each other,” a situation addressed in the Hollywood blockbuster Five Feet Apart.
“As a kid, it’s hard not being able to be with other kids with CF,” says Reggie.
“They are separated to prevent the spread of any insects they have.
“If we go to the hospital for his office hours, we’ll dress up the moment we walk in the door and we’ll be taken to separate rooms.
“There are all these different rooms. You just wait in there and the nutritionists, physical therapists and doctors all come to you – so you don’t spread potential bacteria.”
Although Lucas was not diagnosed until a few weeks into his life, he did not become aware of the disease until he was about four years old.
“We were constantly in and out of the hospital having PICC lines put in our arms,” says Reggie of the thin tube that goes into a vein to provide the necessary fluids.
“It wasn’t until he was four or five years old that he thought, ‘What’s wrong with me?'”
Lucas, now 12, has spent his life constantly in and out of the hospital while trying to maintain a normal childhood.
“It’s mentally exhausting for him,” says the “Big Brother” star.
“I can see when his friends are coming over for the sleepover.
“I order them a pizza and I say ‘Lucas, take your pills’ and he doesn’t like to do that in front of his friends – it embarrasses him.
“I have to trust him at school to take his tablet.
“Sometimes I know he didn’t because when he comes home and goes to the bathroom, I know he didn’t.”
When he confronts Lucas about the pills, he tells her, “I hate it mom, I hate it.”
Reggie says that the average person doesn’t generally realize the importance of their breathing.
But someone with CF must “do whatever it takes to stay healthy and alive.”
“It goes on, it’s endless.”
When he’s not at school or in the hospital, Lucas is like any other 12-year-old boy: a basketball fan and a lover of fishing and the outdoors.
One drug that has been a breakthrough for Lucas over the past two years is Trikafta, a drug just recently approved in Australia that corrects the faulty protein created by the faulty CFTR gene.
This then improves breathing and lung function, they say Sydney Children’s Hospital.
“It changed Lucas’ life,” says Reggie.
Reggie is concerned that her son may have to stop taking Trikafta due to his high liver function tests.
“It made him want to eat something because he never had an appetite.
“And he’s a lot healthier, but maybe he has to forgo it because of his liver.
“I hope not.”
Despite all the hospital visits, meds, and unknowns, Reggie remains positive, saying, “You can’t let it get you down, so you always have to try to be one step ahead.”
“You always have to keep an overview, you can’t be lazy … Otherwise you end up in the hospital.”
Reggie uses her voice to raise awareness of this heartbreaking disease that depends on donations.
“The research does not receive any state funding, it is exclusively a matter of donations.”
Reggie will appear on Community Care for Cystic Fibrosis‘s 65 Roses Day (May 26) live podcast – join us www.cfmonth.org.au Find out how you can get involved or donate.
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