Weed family raises funds to bring daughter with cystic fibrosis to U.S.
A Weed couple is transforming their grief over losing a daughter to cystic fibrosis into support for their other daughter who has the same condition.
Monique Harmse, who lived in South Africa, was 24 when she died on Oct. 25, said her stepmother, Jessica Harmse of Weed.
Monique’s sister, 20-year-old Marleen, also has CF, Jessica explained.
Jessica and her husband Matt, the girls’ father, as well as their three sons, have created a GoFundMe campaign to assist Marleen in her fight and to allow her to visit the United States, where treatment for CF is better and more affordable.
The Monique Harmse Memorial Fund honors Monique and benefits Marleen. So far, $2,000 has been raised of the family’s $50,000 goal to ease Marleen’s financial burden and to make managing her condition less stressful.
“A person who is ill should not have to worry about whether or not their treatment is affordable,” Jessica said.
Life expectancy for those with CF — a life threatening, hereditary disorder that damages the lungs and digestive system — is considerably lower in South Africa, as medical care there is “very limited” and Marleen has “many unmet needs related to maintaining her condition,” said Jessica.
Although newborns today are screened for CF, the Harmse girls — who were both born in the U.S., Monique in Redding and Marleen in Mount Shasta — were diagnosed when they were older, 13 and 9, respectively.
Because of her condition, Marleen needs physiotherapy to loosen mucus that builds up and becomes lodged in her lungs. An airway clearance vest would assist in this goal and allow Marleen to maintain her independence, but her health benefits in South Africa will not cover the device.
“The airway clearance vest is our top priority at this time,” said Jessica, and money that’s raised in the campaign will go toward this purpose.
Any additional funds will be used for medications and supplements Marleen needs to maintain optimal health, Jessica said.
If funding allows, the Harmse family would like to bring Marleen to the U.S. to reunite with her father and meet her three half-brothers in person. While she is here, she can explore treatment options and, if she wishes, Marleen may eventually meet the criteria for a lung transplant.
In order for a lung transplant to happen, however, Marleen’s overall health and physical condition must be stable and she must remain very dedicated to her prescribed treatments.
From South Africa to Siskiyou
Matt, who is from South Africa, fell in love with the Mt. Shasta area while doing missionary work in 1994 and he decided to pursue a career in nursing. He and his wife at the time had Monique and Marleen before they divorced, and the girls moved with their mom back to Africa in 2002, Jessica said.
Matt and Jessica were married in December 2003.
Marleen has never met her three half brothers in person — 14-year-old Aiden, 11-year-old Elijah and 3-year-old Benjamin — although they have found many other ways to stay close, including video calls, phone calls and texting.
In order to have CF, both parents must be a carrier. Matt and the girls’ mother were unaware they were carriers, since cystic fibrosis had never presented in their families, Jessica explained.
Because of their parent’s genetics, the Harmse girls each had a 25% chance of having CF.
Matt is a nursing supervisor at Fairchild Medical Center in Yreka. Jessica was also a nurse before becoming a homemaker who homeschools her older boys, so they would be able to provide Marleen with home care if she were in the U.S.
Before her death, Monique had been in declining health, but the coronavirus pandemic made it impossible for the Harmse family to travel to see her before she died, or to attend her funeral in person, said Jessica.
It’s also keeping Marleen at home in South Africa while the pandemic rages.
Although Marleen was previously working part time, she needs to be careful now to avoid COVID, since it would be devastating for someone with CF, Jessica said.
“We will fight and we will fight hard,” said Jessica of their fundraising campaign. “Our goal is to spread awareness of this condition and to offer hope and support to others who also share in our same war. Furthermore, we aim to honor Monique and to support Marleen through love, prayer, fundraising and donation.”
To read more about the family's mission, visit their Facebook page "Harmse Family Support: United Against Cystic Fibrosis." People can donate online via Go Fund Me. There is also a donation account for Marleen Harmse at Banner Bank’s Mount Shasta branch where people can donate locally.
“We are so appreciative of the outpouring of love and support we have received from our community,” said Jessica, “especially during such a challenging and turbulent time in our nation.”
Skye Kinkade is the editor of the Mt. Shasta Area Newspapers and the Siskiyou Daily News. She is a fourth generation Siskiyou County resident and has lived in Mount Shasta and Weed her entire life.