Valley Springs family seeks donors for teen’s kidney transplant

Marie-Elena Schembri, Calaveras Enterprise, April 27, 2023

Last month, Angie Richards found out that her teenage son was dying. A rare, incurable disease called Focal Segmental Glomerulosclerosis (FSGS) had already damaged 80% of 14-year-old Valley Springs teen Alex Britt’s kidneys. This devastating diagnosis meant Alex, an energetic athlete described by his mom as a “very kind, wise soul,” wasn’t likely to live past his 18th birthday.

The month before, on Valentine’s Day, Alex threw up while at school and was sent home early. Shortly after, he called his mom at work, complaining that his “heart was hurting.” Alex wasn’t one to complain, Richards said, so her husband, Chris Richards, took Alex to the emergency room at Sutter Amador Hospital in Jackson. There, heart tests revealed abnormalities, so the boy was taken by ambulance to Sutter Medical in Sacramento, where doctors determined that the teen’s heart was normal, but his kidneys were failing.

Richards said the family wouldn’t have known about Alex’s kidney disease if they hadn’t “stumbled across it” because of the blood tests done that day.

Alex’s extremely rare disease, FSGS, attacks the kidneys from the inside by causing scar tissue within structures called glomeruli, which filter waste from the blood. FSGS leads to nephrotic syndrome, which allows protein to leak out of the bloodstream into urine and causes swelling, high cholesterol, and high blood pressure, eventually leading to kidney failure.

FSGS can be caused by several other conditions within the body, including other infections and diseases such as HIV or diabetes, but can also be caused by genetic mutations that a person is born with. Treatment including steroids, immunosuppressants, and dialysis won’t cure the disease, but can help prolong the life of the kidneys until a transplant takes place. Unfortunately, the recurrence of the disease after receiving a transplant is common, and the likelihood of that recurrence may disqualify someone with FSGS from a transplant in the first place.

Fortunately for Alex and his parents, genetic testing determined that Alex does qualify for a transplant. Testing also revealed that he has an extremely rare genetic condition called Frasier syndrome, which is what caused his disease. As of 2013, only 50 cases of Frasier syndrome were known worldwide.

Richards said the family was “very lucky” to receive this information since many people with FSGS never find out the cause of their disease. Having a diagnosis, however, doesn’t change the fact that Alex needs a new kidney.

His disease has not been responsive to steroid treatment, and in just two weeks Alex’s kidney function has declined by 8%. Barely six weeks since he left school feeling sick, the 14-year-old has been diagnosed with stage 4 kidney failure.

The Toyon Middle School student whose favorite class is P.E., who loves sports and being outside playing with his dog or riding dirt bikes, is too sick to go to class now and has to take several naps a day. He has high blood pressure, has to eat an extremely limited diet that is causing him to lose weight, and is extremely lethargic. Alex is weaning off of prednisone, a steroid medication that can cause agitation, mood changes, insomnia, and other unpleasant side effects.

It’s been difficult not only for Alex, but for his mom, who has to continue to go to work every day at Amador County Child Protective Services, helping other kids while she has to leave her own sick son at home.

“It’s been really hard,” said Richards. Richards has to keep her benefits, and her paycheck, to make sure Alex can keep getting the very costly care that he needs. Richards started her new job as a supervisor in February, the same month that her son got sick, and only a month after Richards’ husband, Chris, launched a brand new business as an independent contractor.

The family is thankful for relatives and friends who have offered support in the form of prayers and kidney-healthy meals for Alex, and offered up their own kidneys as living donors.

While a handful of family members, including Richards, have already started the process to become donors, there are still many hoops to go through before finding a kidney that’s a match for Alex, which is why they’re hoping to get many more donors to come forward.

Ideally, Alex’s doctors at the UC Davis Transplant Center would have a large pool of potential living donors to choose from. From those, they’ll make a shortlist of the best possible matches. Potential donors have to meet basic requirements such as being free from tobacco use and diabetes and having a healthy BMI. No one under 18 can be a donor, and donors must have a compatible blood type, which for Alex is anyone with Type A (negative or positive) or Type O (negative or positive).

Potential donors undergo a screening evaluation and a series of medical tests to ensure their kidney is compatible. Once a compatible kidney is found from either a living or deceased donor, Alex and his donor will undergo surgery, and each will have a recovery period in the hospital, which could be one or two days for a donor, and several days to weeks for Alex.

If Alex’s body accepts a new kidney, it could add decades to his life, but finding one is the first hurdle. Some of Alex’s family members have already been disqualified due to their medical history.

Alex is on the national organ transplant list, which currently has over 100,000 people in need of an organ, 85% of which are waiting for a kidney, according to data from the Health Resources & Services Administration. According to the National Kidney Foundation, 13 people die each day while waiting for a kidney transplant, and every 14 minutes someone else is added to the list.

Richards admits she doesn’t like asking for help, but if it could save the life of her son or another person in need, she hopes that everyone would consider organ donation.

“I have always been passionate about asking people to consider if a loved one passes to donate their organs, or if you’re a living person, and you’re in good health, and you truly want to give back, that there are many, many other people in the world that are waiting. And so I think that would be my ask,” said Richards.

The mom who is often a first responder and lifeline to children who are in crisis is hopeful that her own son will overcome the challenges in front of him to live a long and healthy life.

“I’m scared to death to lose my son,” Richards admitted, but said she remains optimistic.

“I truly believe that I’m going to watch my son grow up and be an amazing father and husband,” she said. “I can’t wait to see what he grows up to be.”

To find out more about becoming a donor for Alex, contact the UC Davis Health Transplant Center at 916-734-2307 or visit their website at health.ucdavis.edu/transplant to fill out the kidney donor questionnaire. Alex’s date of birth, March 30, 2009, and full name will be required.