Bringing awareness to a rare kidney disorder: Alyssa’s story

When nine-year-old Alyssa was four, a doctor discovered she had high cholesterol. 200 would be high for an adult, and her levels were at 600, her mom Madelynn says.

“We were just at her normal 4-year-old checkup, and her pediatrician and I were stumped to see those numbers,” Madelynn recalls. “No under age 50 in our family has ever had a cholesterol problem before.”

Alyssa’s pediatrician recommended diet changes and fish oil. But during a check-up a few months later, her numbers hadn’t improved, so her pediatrician referred her to a cardiologist. That cardiologist confirmed Alyssa’s heart was healthy but couldn’t explain why her cholesterol levels were so high.

Back at their pediatrician’s office, a urine sample showed high levels of protein. They were referred to a CHOC Children’s nephrologist, who was finally able to diagnose Alyssa with nephrotic syndrome caused by focal segmental glomerulosclerosis (FSGS), a rare kidney disorder.  FSGS is a disease where scar tissue develops on the part of the kidney that filters waste from the blood. Symptoms can include swelling, weight gain and high cholesterol. FSGS can lead to kidney failure.  Alyssa’s FSGS is caused by a genetic mutation.

Alyssa and her family hope to raise awareness of her rare kidney disorder. She is living with nephrotic syndrome caused by focal segmental glomerulosclerosis, also known as FSGS.

FSGS is a rare condition. Currently, there is no cure for FSGS, although various research studies are in progress. To date, Alyssa has tried ten different medications and treatments—each of which are originally designed for other diseases, but she has not responded to those treatments.

“If my own mother were not a registered nurse, I think I would’ve been overwhelmed with the medical world we were thrust into upon diagnosis,” Madelynn says. “I’ve had to educate myself about a lot of these medicines, so I knew what I was putting into my daughter.”

Because Alyssa is immune-comprised, she gets sick more easily than others. She’s been admitted to CHOC several times during flu season when she just can’t fight off certain bugs.

Besides those unplanned admissions, Alyssa comes to CHOC every four to six weeks to see her nephrology team, including: Dr. Dorit Ben-Ezer, Dr. Patricia Veiga, Dr. Shoba Narayan, Dr. John Nguyen, and nurse Mary Stangeland. Alyssa’s care team monitors the progression of her FSGS with lab work.

Alyssa, diagnosed with FSGS, comes to CHOC every four to six weeks to see her nephrology team.

“Her doctors are just as frustrated as we are that she hasn’t responded to all the treatments we’ve tried,” Madelynn says. “FSGS is rare, and her team wants to find new medications that will help her.”

Madelynn hopes to offer sympathy and comfort to other parents whose children are living with rare diseases.

“Parenting a child with a rare disease is worrisome and frustrating,” she says. “It’s important that we try to educate people about the need for further research.”

Explore nephrology services at CHOC

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How One CHOC Walk Corporate Team Generates More than Good Will

It started with a personal connection to CHOC Children’s; one that sparked a grateful family to give back through their business. Their intent was to raise funds and awareness for the hospital that did so much for them. Their efforts yielded more than they anticipated.

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Larry and Angela Worsham, operators of Chick-fil-A North Orange, brought their son Nathan to CHOC Children’s Hospital when he was 2 years old. He was diagnosed with nephrotic syndrome, a kidney disorder that causes the body to produce too much protein in the kidneys and urine. It can lead to swelling, weight gain and increased risk of other health problems.

Because of his condition, Nathan was hospitalized once, when he was in kindergarten. The now 14-year-old sees a CHOC nephrologist about every four months.

“The care Nathan received from the physicians, nurses, child life specialists and other staff when he was admitted to CHOC, and the care he continues to receive, is first class,” says Angela. “We are grateful to CHOC and are honored to support such an amazing place.”

Angela and her husband reached out to the CHOC Children’s Foundation after learning operators of another Chick-fil-A were CHOC supporters. They wanted to see how they could get involved.

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“Ever since that initial call from Angela, she and Larry have remained steadfast in their dedication to supporting our greatest needs,” explains Zachariah Abrams, assistant vice president, community engagement and special events, CHOC Foundation. “They’ve been amazing partners who are always open to new ideas. We are grateful for everything they’ve done.”

The Worsham’s support began with donating prizes for the CHOC Walk in the Park, presented by the Disneyland® Resort. They were also quick to meet requests for donating food for patient and staff events, which they continue to do. One of their favorite things, admits Angela, is providing a monthly dinner in the family room, serving the pediatric and cardiovascular intensive care units.

“It’s such an honor and pleasure to provide a little dinner break for parents and family members who spend their days and nights at bedside. And when we are at CHOC, we are always inspired to do more,” shares Angela. “I believe anytime any of us have an opportunity to serve others and act on it, we make our community stronger.”

That desire to serve prompted the Worshams to form, 11 years ago, their own CHOC Walk team “Chick-Fil-A 4 CHOC.”   Angela and Larry encourage their employees’ involvement with incentives, helping grow the team to nearly 200 walkers. Their team has raised more than $100,000. A contributing factor is Cookie Day, on which participating Chick-fil-A locations in Orange County donate proceeds from the sale of their chocolate chuck cookies to CHOC.

They are proud of that successful promotion and for their Walk total, but even more grateful for the friends they have met through their participation in the Walk.

“For us, personally, the best thing that has come out of the CHOC Walk is the relationship with the Hicks family, who founded Team Timmaree Rocks. We’ve walked with them for the past nine years and have become close friends. We’ve taken trips together, making amazing memories,” says Angela.

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In addition to forming valuable friendships, the Worshams have also developed business relationships and have attracted event and catering opportunities because of their involvement with CHOC. Their brand awareness in the market has increased, according to Angela.

“No matter the size of your company or your budget, everyone has the ability to fundraise and support causes we believe in. I do believe when you care more about the cause than what you will get out of it, you will benefit more in the long run,” advises Angela.

If your company or business is interested in supporting CHOC, call 714-509-7676.

Register Now!

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