Cape Town - Since finding its way into hazel-eyed Cole Macleod’s newborn life 15 years ago, cystic fibrosis has brought the teenager to a medical crossroads as he anticipates a much-needed lung transplant.
Diagnosed with CF at just three months old, Cole has soldiered on with his family – who have had to become self-taught experts on the rare condition – but is now in desperate need of funding for medical tests to be done so that he can be listed for the transplant.
The condition results in the over production of mucus, sweat and digestive juices that thicken in the body’s ducts and passageways, causing lung infections and severe weight loss, among other problems.
Cole is currently in hospital with a lung infection for the third time this year. These have become more frequent over the past two years, and have caused considerable damage to the vital organ.
He needs R150 000 for medical testing to be done on him, his mother, Joleen Macleod, told the Cape Times this week.
Macleod explained that, since Cole was diagnosed with CF, the family had researched the illness and, with the assistance of medical experts and doctors at the CF Clinic and Red Cross War Memorial Children’s Hospital, had to become knowledgeable to help their son as best they could.
“We were made aware of what his life expectancy could be, as well as the medical procedures and complications he could face. However, we did not expect the need for a lung transplant to come so soon. We expected it in later years.
“Currently his medical bills have already climbed well over R400 000, but the funding he needs now is for testing to be done, so that he can become eligible to be put on the list to become a transplant beneficiary.
“But it is all a process. Currently he is on a regime or sort of programme for him to pick up weight for the testing to be done. As a CF child, it is very difficult for him to gain weight, and that is what we are focusing on now,” she said.
Cole’s two siblings have become part of the team of “self-taught experts” at their Belhar home, where the middle-income family have had to do feedings through his IV port and administer medication to him.
“When Cole was first diagnosed, my husband, Brent, and I were devastated. “It (CF) sounded strange and foreign to me, but now, with the amazing support we have, we have been able to give him as much of a normal life as possible.
“He is a teenager who enjoys his time with friends, and we don’t want to restrict him too much, but there are some days we have to draw the line when we know it’s in his best interests. Every CF child is unique.”
“Cole doesn’t talk much, but knows the signs and symptoms of when he feels ill, and will then let my husband and me know. But we have noticed he would much rather share his true feelings and emotions with his siblings.
“When he is not too ill, he is very positive and active.
“He is a strong-willed individual and, like other people, wants to live a healthy and beautiful life.
“As parents, we love to see him achieve all his dreams and aspirations,” said Macleod.
Having made it through many challenges, another daunting time for the family was when they all contracted Covid-19 in 2020.
“At the time, he was admitted to hospital because his oxygen levels were very low. It was a scary and difficult time for us as a family, and we really thought the worst at the time, but we made it through and are very grateful for the support we have,” said Macleod.
Cole said he knew he was special and different because he had CF.
“It's not always easy. Sometimes I wish I was just a normal child like my brother and sister,” he said.
“My mom and dad spoke to me about the lung transplant. I am willing to do it, but I'm also scared. I would like to have a healthy set of lungs so that I can breathe better. I have lots of family and friends praying for me,”
Cole added. Macleod said the biggest stumbling block was getting Cole’s expensive medication and treatment.
“He has another option to get medication which costs R6 million per year. Unfortunately, this medication, which certain governments are funding, is not funded in South Africa. It's called Trikafta, a life-changing medication for CF patients.
“A generic of this can be obtained in Argentina. Although it would be cheaper to obtain the generic, it is still far out of our reach financially.
It’s just very frustrating to know that there is treatment available out there for CF kids like him, but because it’s so expensive, it is out of reach for families like us,” said Macleod.
To contribute to Cole’s CF fight, visit: https://bit.ly/3Vj0j92.
Cape Times