Admittedly, 2020 has been tough for a variety of reasons. One of the greatest? The spread of COVID-19, a novel coronavirus attributed to 72.8 million cases and 1.62 million deaths worldwide. Because of COVID-19, many families find themselves in tenuous situations in regards to medical care. For those with rare diseases, how can they afford treatments, pay bills, attend work, and keep the whole family safe? Jessica Lusk and Dylan Garcia faced this issue head-on as they faced eviction. As reported by People Magazine, the pair’s 3-year-old daughter Brandi has carnitine-acylcarnitine translocate (CACT) deficiency. Because of Brandi’s health, both Jessica and Dylan needed to leave their jobs to reduce the risk of bringing the coronavirus back to the house. Now, through a GoFundMe, the pair has raised over $450k to help.
Brandi’s Story
When Brandi was just a young girl, she was diagnosed with CACT. Unfortunately, at the time, doctors only gave the young girl one month to live. However, Brandi has excelled. She enjoys spending time with her siblings, 6-year-old Elijah and 5-year-old Isabella. But this year, her family faced struggle in managing medical expenses, particularly considering their situation.
According to Dylan Garcia, Brandi has seizures, brain damage, and is also immunocompromised. Her parents gave up their jobs to avoid potentially exposing her to COVID-19, which they fear she would have trouble fighting off. However, this presents a slight difficulty. Medicaid does help pay for Brandi’s medications and home caregiver. Yet as the medical and life expenses have piled up, the family now faces eviction come January.
This prospect frightened Dylan, who questioned how well a homeless shelter could provide adequate health safety for Brandi. Yet things might be looking up for the family. As of the time this article was written, the GoFundMe page has raised $457,213 for the family. Hopefully, this influx in finances will help the family get through this tough time while also providing Brandi with the necessary care.
Interested in donating to help Brandi and her family? Head to the GoFundMe.
Carnitine-acylcarnitine Translocase (CACT) Deficiency
According to the Genetic and Rare Diseases Information Center (GARD), CACT is:
a disease that prevents the body from converting certain fats called long-chain fatty acids into energy, particularly during periods without food. Carnitine, a natural substance acquired mostly through diet, is used by cells to process fats and produce energy.
Typically, SLC25A20 gene mutations cause CACT deficiency. These mutations prevent the body from using carnitine to process long-chain fatty acids. While there is a mild form of CACT that impacts older infants and children, the more severe form affects newborns. Symptoms usually appear within the first 48 hours following birth. These symptoms include:
- Muscle weakness
- Seizures
- Developmental delays
- Abnormal heart rhythms
- Hypothermia
- Enlarged liver
- Excess ammonia in the blood
- Low blood sugar
Learn more about CACT deficiency.
