According to QC Online, at six months old, Lorelei Lovelady was diagnosed with primary hyperoxaluria type 1 (PH1).
Now, almost 9 months, the disease has caused her to need a new liver and a new kidney. Because she is so young, it’s difficult to find an eligible donor. As she waits, she’s undergoing dialysis to keep her kidney functioning as well as possible.
The waiting period has been extremely stressful, both emotionally and physically, for her family.
Lorelei’s parents have another child, a three-year-old boy, and both parents work full time. Her mother has been staying at the Ronald McDonald House near the hospital where Lorelei is awaiting surgery, and husband and son come up to visit on weekends. The family’s been functioning by means of numerous support systems and they vocalize how lucky they feel to have such wonderful people around them.
Lorelei’s mom has been able to stay with her daughter through the generous donations of her coworkers’ PTO. They’ve also received emotional and financial support from their church and numerous contributions on their GoFundMe page. Currently, they’re up to over $11,000 in donations.
The family has stayed hopeful throughout this experience, but they know there’s a long road ahead. Once Lorelei receives a liver, she needs to be at least 10 kilograms in weight before the process can begin for her to get a new kidney. Plus, the kidney transplant process won’t begin until 6 to 8 months after her liver transplant.
While April is technically the designated Organ Donor Awareness Month, stories like Lorelei’s that show the importance of advocating year round for the life-saving possibilities of organ donation.
The Lovelady family showcases strength and resilience like so many primary hyperoxaluria type 1 and other rare disease families do.
This community is truly one of a kind.
