Young woman faces devastating effects of MND
Stephen Hawking was one of the most well-known people in the world with a Motor Neuron Disease. Joost van der Westhuizen, one of South Africa’s greatest rugby players, succumbed to the disease in 2017. But when it’s your wife, your sister, your daughter who is diagnosed with MND, it’s then that the monster hits you in the stomach. When the devastating effects of the disease are no longer something you read about or that happen to someone else, when it’s something you have to live with every day, that’s when your tears don’t seem to be enough, and when your knees become raw from praying and asking and seeking.
Stepping Stone Hospice patient, Daleen Dyer (36) from Florentia, was diagnosed with Motor Neuron Disease in April 2018, a disease that leads to a progressive weakening of all the muscles in the body, which eventually affects the ability to breathe. There is no cure. Could this have been the worst news this young woman could ever receive?
A few months prior this diagnosis, on a beautiful sunny day on the 11th of August 2017, Daleen and husband Gary Dyer’s baby boy, Michael, was stillborn. She carried her long-awaited firstborn full term, only to be told on the day the Caesarean was scheduled, that the doctors couldn’t detect a heartbeat. That, Daleen explains, is news that breaks your soul open - the worst of the worst news.
It’s then little wonder that Daleen, throughout our conversation often started sobbing, helpless tears streaming down her face. Her family, mom Maggie, sister Anja and brothers Andre and Dawie, describe Daleen as the quiet, sensitive, more responsible sibling, the one who would experience life intensely. The death of their father when Daleen was only 7years old, affected her deeply.
Mom Maggie explains the helplessness she feels having to face the fact that her daughter is confined to her bed and a wheelchair. She has only slight mobility in her left hand and is starting to struggle with talking and swallowing. “I’m not angry but my heart breaks to have to witness how my child is stripped from her dignity on a daily basis.”
Daleen’s sister Anja, described as the fighter in the family, has started a fundraising platform for Daleen on the Back-a-Buddy group. “Stepping Stone Hospice kindly donated an electric wheelchair to us. I’m hoping to raise enough funds so that we can get a vehicle in which Daleen can be transported to and from hospitals, doctors, maybe just sometimes an outing. She spends her life in her room, and it cannot be good for her spirit,” Anja explains.
Daleen used to be an avid wildlife enthusiast and says that she would love to be able to return to the bush just one more time. The Dyer’s cannot afford DSTV as the medical bills don’t allow for luxuries, “but I would love to just sit and watch some wildlife programmes,” Daleen says.
Both Daleen and Gary are unwavering in their faith and belief that God has a plan for their lives. Gary works full day whilst a care-giver, Maureen, looks after Daleen. But in the evenings and night-time Gary cooks, cleans, reads and prays with Daleen. “She is devastated when Gary falls ill as she worries and keeps saying that she will die if something has to happen to him,” her mom says.
If you would like to donate to the Daleen Dyer fund, please click on the link, www.backabuddy.co.za/daleen-dyer. For more information, please contact Anja on 083 357 6559
Caption: Stepping Stone Hospice community sister, Sr Margi Bollman (left) and volunteer Yvette van der Walt (right) supporting MND patient Daleen Dyer and her mom, Maggie Goosen (back). Daleen’s four-legged babies, Lucky and Tiffany insisted to be on the photograph as well.