Brave young boy fights genetic disease
MIDRAND – Midrand family raises awareness of a genetic disease called cystic fibrosis.
A Grade 4 pupil from Summerhill School, Luke van Antwerpen, has been battling cystic fibrosis, an inherited genetic disease that affects a number of organs in the body, primarily the lungs and pancreas by clogging them with thick, sticky mucus. Repeated infections and blockages can cause irreversible lung damage and death.
Angela van Antwerpen, the boy’s mother, spoke to Midrand Reporter about how he is daily overcoming the disease and the support the family has received from the school. There is no cure for cystic fibrosis, and most individuals suffering from the disease die young – many in their 20s and 30s – from lung failure. However, with the continuous introduction of many new treatments, the life expectancy of a person with cystic fibrosis is increasing to ages as high as 40 or 50 in some patients.
Van Antwerpen said her son has a sibling who does not have the disease, but both his parents carried the rare gene.”We want to raise awareness for cystic fibrosis. My son has not had an easy start to life but he has fought through the tests and operations and is living life positively. He had nine operations by the time he was three years old.”
She explained how the family took him for tests and yet, nothing showed up on X- rays or the sonar. “We were sent home but because of his vomiting I rushed him off to our GP. He had lost a third of his body weight by then and I had to rush him to back to hospital, where the doctors were waiting for us. That night he had an emergency operation as his small intestine had folded into the large intestine and got stuck. He lost half of his colon and a small portion of his small intestine, and after a week in ICU, he returned home.”
Luke receives treatment from Steve Biko Hospital. His mom said she is thankful for the family he has received from Summerhill School. “I know that he is well cared for when he is at school, That makes me happy and in spite of it all, Luke seems to have a good measure of energy. At the school he is always involved in a sport, such as swimming and loves to run around with his friends at school.”
A teacher at the school, Teressa Oates said, “Pupils in his class often remind him to take his pills and everyone seems to want to make his time at school very much easier. It is sad what he is going through, but he is a fighter.”
The Cystic Fibrosis Association’s chairperson for Gauteng region, Alan Dunn said the association provides emotional support to families; promotes early diagnosis and ensures that all patients receive proper treatment. He explained that with regard to cystic fibrosis, patient’s sweat glands are also affected and the body may lose an excessive amount of salt during exercise or hot weather.
Dunn added, “In early childhood, prominent symptoms include growth problems or frequent infections, especially of the lungs. As the disease progresses, frequent lung infections [pneumonia] often lead to problems breathing, lung damage, prolonged courses of antibiotics, and respiratory failure requiring support by a ventilator. Cistic fibrosis can also lead to frequent sinus infections, diabetes mellitus, difficulty with digestion, and infertility.”
According to the association’s website, ‘…The most consistent aspect of therapy in cystic fibrosis is limiting and treating the lung damage caused by thick mucus and infection with the goal of maintaining quality of life. Intravenous, inhaled, and oral antibiotics are used to treat chronic and acute infection.”
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