10-year-old Jakob has been diagnosed with three conditions in under two years
An Adelaide mum is raising awareness for a rare condition that has left her 10-year-old son Jakob with irreparable lung damage.
SA News
Don't miss out on the headlines from SA News. Followed categories will be added to My News.
A north eastern suburbs mother is raising awareness for sufferers of an immunodeficiency disease that has left her young son with irreparable lung damage.
Tracey McIntyre’s 10-year-old son Jakob McIntyre has been diagnosed with three different conditions in just under two years.
“It’s a little bit unreal that it’s happening to my child,” Ms McIntyre said.
Jakob was diagnosed with common variable immunodeficiency (CVID) in August 2022 after previously being diagnosed with myositis – a rare condition causing painful muscle inflammation – in January 2021.
“It’s been a rollercoaster,” Ms McIntyre said.
Jakob, who also has autism and sensory processing disorder, underwent more tests after an ongoing cough raised suspicion.
It was soon discovered that Jakob has lymphocytic interstitial lung disease.
“The lung disease is the scariest part of all this,” Ms McIntyre said.
Before being diagnosed with CVID and having monthly plasma infusions, Jakob did not have enough antibodies to fight infection. As a result, Jakob’s previous bouts of pneumonia and other illnesses caused damage to his lungs.
“The key now is to prevent further damage and how we do that is to prevent infections,” Ms McIntyre told The Advertiser.
“If we had have known he had the immunodeficiency and he was already having the plasma transfusions then we would be at the place we are now … when he hasn’t had an infection for quite sometime.”
Ms McIntyre said Jakob has also had ongoing gut issues and will undergo “a couple of procedures” to determine whether he has coeliac disease or an inflammatory bowel condition caused by CVID.
“If I can gain anything … it would be to bring awareness to CVID in order for a faster diagnosis,” she said.
“We still have a long way to go and still have many questions and obstacles but hopefully we can help with more research or knowledge by talking about it.”
Ms McIntyre said she worries about how the diagnoses will impact Jakob’s future.
“From the reading I’ve done, people with CVID have a shortened life because they are prone to getting infections,” she said.
Ms McIntyre said Jakob has remained positive throughout his journey.
“He is a very positive, happy child and obviously very strong,” she said.
So far a fellow school Mum has raised $1,275 for Jakob’s cause. To help Jakob on his journey donate via GoFundMe.