Last summer, Helen Lynn, who turns 3 Thursday, visited Hyatt Lake and Applegate Lake with her family and took swimming lessons at the Ashland YMCA.
She has a little white swimsuit with red flowers, and she loves to splash around and dive for rings.
But this summer will be different. Unless the water is chlorinated correctly, Helen can't swim. She can't even splash around in a bathtub or play with a pail of water unsupervised.
Helen was diagnosed with a chronic kidney disease last fall and wears a permanent catheter in her abdomen as she undergoes dialysis daily. She can't swim because she can't risk getting an infection at the catheter site.
"She always looked forward to swimming lessons, and I've been taking her since she was 3 months old," says Lauren Lynn, Helen's mom. The Lynns, formerly of Ashland, moved to Medford last year.
Last August, Helen contracted an ugly strain of E. coli from an unknown source and a subsequent bout of hemolytic uremic syndrome that landed her in the pediatrician's office, followed by two trips to the emergency room. On Sept. 1, Helen was medevaced to Doernbecher Children's Hospital at Oregon Health & Science University in Portland.
"I knew things were bad, but I didn't know how bad," Lauren says. "Within 12 hours of arriving, she had a surgery to put in hemodialysis catheters and a central line so doctors could get samples of her blood every day."
Byron Lynn, Helen's dad, explained that the toxins within E. coli are jagged and can scratch the vascular walls and cause small blood clots to form.
"It's a clotting action in the major organs, and it just happened to shut her kidneys down first," he says. "Her pancreas was slightly affected. The lungs were affected, and the colon. We were suspecting the brain, but we were lucky it didn't affect that and cause a stroke."
Pregnant with her second daughter, Lauren stayed with Helen at the hospital during her 60-day stay. Byron, a Mercy Flights pilot, visited every weekend.
"She had all the nurses at the hospital wrapped around her finger," Lauren says.
Helen was fed through IVs and received hemodialysis daily. The hemodialysis did the job of her kidneys by filtering the blood of waste and extra fluids.
"It was basically a waiting game," Lauren says. "She was bedridden for such a long time that (her muscles) atrophied, and she had to go through physical therapy to walk again."
At first, doctors thought her kidneys would recover, and she would no longer need the dialysis. But as the severity of her diagnosis became apparent, they realized that wouldn't be an option. In March, doctors recommended a kidney transplant.
Although a match for the transplant has yet to be found, Lauren is hoping the procedure will take place sometime this year.
In the meantime, the Lynns are administering peritoneal dialysis from their home in Medford.
Around 8:30 p.m. every day, they don their face masks, wash their hands with antibacterial soap, bleach the dialysis equipment and hook Helen's catheter to the suitcase-sized machine.
"It has a series of pumps and every hour the fluid goes into her body and sits in what's called a 'dwell' for roughly an hour and then exits the body," Lauren says. "The toxins in her body are attracted to this liquid through osmosis."
The dialysis runs for nine hours and shuts off around 6 a.m. To Helen, this is known simply as "belly juice."
Lauren says she is tied to the house most days of the week with her "little dynamite" and her now 2-month-old daughter, Addison. Helen may not be able to swim or go camping this summer, but she takes a hip-hop dance class and Music Together class in Ashland with her best friend, Bodhi Jukes, 2.
She also tried a gymnastics class, which, unfortunately, resulted in a hernia in November, followed by an emergency hernia repair surgery in February at Doernbecher.
Through it all, Lauren counts her blessings. Her family has good medical insurance through Mercy Flights, which also offers free medevac flights to its employees.
Although the bill for Helen's first hospital stay was more than $400,000, and one of the medications cost nearly $250,000, most of the expenses were covered by their insurance. "We only have to pay a few hundred dollars here and there," Lauren says.
But that adds up, as does Helen's prescriptions and traveling to Portland every month for her appointments. Before moving from Anchorage, Alaska, to Southern Oregon last April, Lauren worked as a risk manager for an insurance company. Now, Helen requires her full-time attention, and Lauren's job plans and a second income had to be put on hold.
In celebration of Helen's birthday, May 8, the Children's Organ Transplant Association, an Indiana-based nonprofit, is facilitating a fundraiser to raise $75,000 for the family's medical expenses. Four local Yogurt Hut locations have agreed to contribute 10 percent of their sales through May 31 to COTA for Helen. Customers should mention Helen's birthday when they pay. Participating locations include Ashland, South Medford, North Medford and Grants Pass.
"Every single penny we raise for COTA goes to Helen," says Dana Schallheim, a friend who is spearheading the fundraiser. "They don't take a percentage nor do they charge the family a fee."
COTA volunteers are working with the Medford Rogues baseball team and ScienceWorks Hands-On Museum to organize other fundraisers later this year.
On Friday morning, Helen could barely sit still for her music class at the Oak Street Dance Studio in Ashland. She chased Bodhi around in her little teal tutu, rang bells with her mom and followed teacher Laurie Finear's movements and rhythms.
"She's got a lot of spunk," says Lauren. "She's just a happy kid ... and very resilient."