Ad from Breda was told early on that he would not have long, but refused to let that determine his life. With a donor heart and his sister Anita L’Abbee (60) always nearby, he continued to laugh, keep going and believe. “My brother didn’t give up.”
Always together. Two hands on one stomach. Ad and his big sister Anita were a familiar duo: you never had to look for where one was, because the other was always close by. “Wherever I hung out,” says Anita. “Ad always walked with me.”
Even when they are young, they are inseparable. “We soon saw that he could not always keep up with the group: other children his age were simply faster.” Ad had difficulty walking and regularly fell when he tried to run. “He was bullied because of that, but I always protected him. Because if you touched him, you also touched me.”
At first it was thought that the tendons were shortened, but a blood test provided clarity: Ad had Becker muscular dystrophy, a hereditary muscle disease that slowly affects the muscles, including the heart muscle. “That was the first time it was said that Ad would eventually end up in a wheelchair.”
“We were told we had to say goodbye to him.”
A few years after the diagnosis, Anita was visiting her little brother when Ad suddenly didn’t feel well. He vomited blood. “We received the message that he was on a ventilator,” says Anita. “And that we had to come to say goodbye.” And in the hospital room, Anita sits down next to him: “You won’t leave me alone, will you?”
Not much later, the family heard that Ad’s heart was seriously weakened. A heart transplant was his only chance. He was put on the waiting list. Shortly afterwards, Anita received a call while she is on holiday with her family. “The message: ‘They have found a new engine for Ad’.”
In 1993, Ad received a new heart. At that time, the operation was still relatively new in the Netherlands and entailed many risks. The doctors say he can probably live with it for ten to fifteen years.
Still, things went well for Ad. He recovered and started his life again. A few years later he went with the family to Austria. “With our children in front on his electric wheelchair. Ad really enjoyed that holiday,” says Anita. “He later called it ‘his best holiday ever’.”
Years pass. 20. 25. His heart continued to beat for longer than anyone could have predicted. He worked, he laughed, he became a father to his daughter Melissa. A proud father. A strong father. “When he was 25 years old, Omroep Brabant even came to his work with flowers. He thought that was wonderful,” says his sister.
But even a strong body has limits. Hospital controls remained strict and the risk of rejection constantly hung around him. In recent months the results became increasingly worse. “He had a hard time,” says Anita. “My brother was sober, but dead… no. He didn’t want to die. He still wanted to take his daughter to the altar.”
“My brother didn’t give up.”
The pain increases day by day. Ad tried to hide that from his family, but they saw how difficult it was for him. When his body starts to poison itself, Ad understands that the time has almost come. In a quiet moment he said to his sister: “Now you have to do it alone.” Ad died on July 9, 2019, at the age of 51.
He lived 26 years with his donor heart, considerably longer than the 10 to 15 years doctors had predicted. Anita attributes this to his strong will and perseverance. “He didn’t give up.”
“I could talk about my brother forever.”
The loss remains. Yet Anita experiences that Ad is still with her. On her birthday, shortly after his death, a butterfly landed on her husband’s shoulder. It stayed there all day. Later she experiences something similar in the village, when a butterfly lands on her finger. “For me that is Ad,” she says. “As if he’s just saying hello.”
Forever In Our Hearts
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