After years of struggling with what they thought was a heart defect, these newlyweds discovered it was in fact a rare genetic disorder that was affecting Keenan van Rheede’s heart and skeletal muscles.
The Strandfontein couple however remain positive despite their mounting medical bills.
Keenan, 32, has battled the condition since the age of 20 years when doctors implanted a pacemaker in his chest, convinced that he had a heart issue.
It was only two months ago that they delivered the devastating blow that he needs a heart transplant.
After just nine months of marriage to his beloved Robin-Lee van Rheede, 27, they discovered he is suffering from Myofibrillar Myopathy.
Myofibrillar Myopathies are a group of conditions that affect muscle function and cause weakness. They primarily affect skeletal muscles.
A weakening of the heart muscle (cardiomyopathy) is also common and may manifest as arrhythmia, conduction defects or congestive heart failure.
Keenan explains: “It is a struggle daily with mobility but with help and support, I take it day by day. There is no cure or medication but I exercise daily. Some days are better than others.”
Robin-Lee says she has taken on two jobs as her husband has become severely disabled, suffering from debilitating muscle weakness.
“Despite his diagnosis, my husband remains remarkably positive, believing that this is part of our Lord’s plan for his life. His optimism and passion for life continue to inspire me, even though we often receive strange looks because of the way he walks or his need for assistance. We even had someone ask us if he is drunk.”
The couple is seeking any assistance to help with medical expenses and have startd a BackaBuddy account in hopes of raising R40 000. To assist, go to https://www.backabuddy.co.za/campaign/a-journey-of-hope
marsha.dean@inl.co.za