by Rhonda Massad
As newly appointed freelance writer for The Suburban in 2014, I followed the life of a remarkable little girl with Krabbe disease, Lauren and her parents, Amanda Zarifah and Stephen Loughheed. Lauren lived beyond the two year life expectancy of a child with Krabbe. I was truly blessed to have met such an incredible family with courage beyond any I have ever seen.
“Our beautiful Lauren left us for heaven today at 3:00 p.m.” Lauren’s family posted on Facebook late Monday afternoon, “We were so lucky and privileged to be her parents. I am so proud of her strength and spirit. Thank you all for your wonderful prayers and thoughts. Her life was a miracle, we thought two years old would be something but she lived over four, everyday a wonderful memory.”
It was with courage and strength that her family raised her and sought to educate the community on the rare disease that could be prevented with expanded new born screening.
“Expanding new born screening could save the child’s life. There are cases that children with older siblings that have Krabbe got tested early, had cord transplant and live a normal life today. The fact that Lauren was not screened means we did not have an option. Once symptoms appear it is too late,” Stephen Loughheed told The Suburban at her fourth fundraising party held earlier this year.
The community, The Suburban and I wish the family strength at this difficult time.