Community rallies behind Reagan
During the 10 short years of Reagan’s life, he had dreamed of being famous, and in his last week he achieved that, with the story of his brave battle through a rare disease being spread far and wide to raise awareness around Adrenoleukodystrophy (ALD).
Since Reagan’s diagnosis eight months ago, his mother, Lineé Havinga, set out to raise awareness around the debilitating disease which, if not caught early, has a fatal progression.
Reagan’s brave battle with ALD came to a close at the beginning of this month, after slipping into a coma.
However, before his death, his mother’s dedicated efforts to raise awareness about ALD had people from all corners of the globe wearing blue in support of Reagan.
What started out as a way for Havinga to vent and create awareness around ALD on Facebook at the onset of Reagan’s diagnosis in January this year, ended up creating a community and support system for her.
Havinga said when she posted her appeal for people to wear blue on Friday, August 26, in support of Reagan and to raise awareness around ALD, she had no idea the response would be so huge.
“It just grew wings of its own and took off. I had friends in Australia, New
Zealand,
Mauritius and the USA wearing blue. I have never felt so loved. It was so uplifting and has given me such strength to be able to endure these last few days we had left,” she said.
“Reagan always dreamt of being ‘famous’, well he has achieved that. It may not be a
YouTube channel, but it is something so much more powerful,” Havinga said.
“I just pray that I can continue to make him proud and keep his legacy going. When I was pregnant with Reagan I had a dream that he was going to change the world. We are starting small, but I hope, with the help of the community, we can make a difference.”
Before Reagan’s diagnosis, Havinga had no knowledge of the disease. ALD attacks the membrane that cover nerve cells in the brain and spinal chords. “Early diagnosis is crucial, it is the only way to
overcome this horrific disease. If caught early enough it can be monitored and stem cell treatment can stop it in its tracks, but once symptoms start it is too late.”
“One in 17 000 boys are affected with ALD, so although unknown, it is not a rare disease, in my opinion. It should become a standard test at birth for boys and girls who could possibly be carriers.”
Reagan’s journey inspired Havinga to spread the word and raise awareness around ALD, in the hopes that other parents can be spared the pain that has shattered her family.
“If I had heard my story when Reagan was born, no amount of money would have prevented me from fighting to have him tested. He would have been able to live a full and normal life,” she said, adding that the lack of awareness made her son’s diagnosis more difficult to navigate.
“I had to google what his diagnosis was. When he went into hospital for a “standard” EEG and MRI, I never expected to find out my son has a death sentence of maybe two years.”
Although the disease manifests differently for each child, the outcome is the same.
“Doctors are still totally at a loss when it comes to this disease, so it was very hard to get any concrete answers from anyone. It’s like walking through a mine field completely blindfolded, not knowing what each step will bring.”
As a mother, Havinga said one of the toughest things she has experienced was to helplessly watch her son regress from a fullyabled 10-year-old to not being able to move, or even read.
“At the beginning of April he lost the ability to read. The dementia was getting worse and he had to be under constant watch.
“I will never forget the night he looked at me and asked me why he can’t read anymore, it truly broke my heart,” Havinga said.
In June the disease progressed more rapidly and Havinga had to adjust to having a blind child. “He was losing the ability to walk and in July was the last time he got out of bed.”
The family banded together to take turns around the clock watching and caring for Reagan.
“It has been incredibly tough, but I think the fact that it is progressive made it easier – not that is has been easy by any means – but there is an awareness that things are going to happen so you can be semi-prepared for them.”
What was extremely difficult, however, was watching other children doing normal activities her son should have been doing, and just a few months before, was able to.
Reagan loved building things, playing Lego and computer games, a well as jumping on the trampoline.
“He loved cooking; food was a huge part of Reagan’s life and he so badly wanted to be on a cooking show. We would sit and watch the cooking channel together all the time,” his mother said.
Describing Reagan as a “ray of light, with a mind-blowing wit and sense of humour”, Havinga said her son had displayed unbelievable courage throughout his battle with ALD.
“He never ever complained, he just took every day in his stride. Always with a smile on his face. His strength blew me away.” She added that her son had the biggest heart and was the kindest person she has had privilege of knowing.
Havinga thanked the community for their support. She said the most important thing when caring for a child with a rare disease is having a strong support system.
“You cannot do it alone. And people want to help. I have the most incredible support in family and friends, and the community of Hilton and Pietermaritzburg has literally taken me and my family under their wings and cared for us in the most inspiring way,” she said.