BY COTY DOLORES MIRANDA, AFN Contributor
With the new year barely underway, an Ahwatukee single mother and her two daughters are already facing medical hurdles that will further drain their meager budget.
Both teenagers are battling rare diseases and are now listed as Armer Kids on the Ahwatukee-based nonprofit Armer Foundation for Kids website. They are the second set of siblings to be aided by the nonprofit.
The elder daughter, 17-year-old Reagan Sarver is the newest Armer Kid added to the growing list of local children the nonprofit is aiding.
In the past few years, her sister, Riley Sarver, now 12, has battled Perthes, undergoing numerous surgeries to improve the disease – which affects the blood flow to the femoral head, causing the bones to die and generating in ongoing pain according to Stam.
Riley and her mother last week traveled to Baltimore for another operation, this time to repair two of six pins in her upper leg bone that have shifted since they were put in place last April.
In the meantime, Reagan Sarver, who turned 17 on Jan. 3, has been diagnosed with a rare disease that has left her unable to digest food.
“In March of 2022 I started noticing Reagan‘s weight loss and I wasn’t sure if it was because of her worry over her sister or not, so I kept an eye out on it and got her into counseling,” explained her mother.
Reagan’s weight loss continued, so last January she was admitted to Phoenix Children’s Hospital’s gastroenterology department, which determined she should have her gallbladder removed.
After that surgery, doctors continued to be concerned over the teen’s continued weight loss.
“She was able to gain a couple of pounds after that surgery, she got up to 109. And now, she’s back down to 95.6 pounds,” said Stam of her 5’5” daughter, a Desert Vista High School junior.
Subsequent testing found Reagan could not digest her food.
A radiologist grew concerned after noticing barium given to Reagan for the test didn’t move through her intestine as it should.
“I walked into the room after the test and the radiologist said, ‘I’m really glad you brought her in today, I will get her results immediately to the surgeon,’” Stam recalled “I said we weren’t referred by a surgeon, but Reagan’s GI doctor.
He then showed me how the barium was just sitting in place and not moving through her small intestine.
“The doctor continued to tell me that he had to move Reagan in different positions just to get the barium to go through.
Again, like my other daughter, this is an extremely rare disease known as Superior Mesenteric Artery Syndrome, or SMAS,” explained Stam.
Explaining she had yet to discover any doctor specializing in SMAS, Stam has begun her own research.
As she and Riley prepared for the Jan. 5 operation last week in Baltimore, Stam was also working to get her eldest daughter seen by physicians at Johns Hopkins.
Stam’s research originally helped pin-point help for Riley in Baltimore three years ago.
At present, what’s next for her eldest daughter remains unknown.
“Reagan will either need to start with a feeding tube or vascular surgery. However, this is all just me researching,” said Stam. “We have not yet found a doctor so I don’t know exactly the course of action at this time.
“I called Johns Hopkins several times and haven’t heard back yet.”
Besides her newly-identified gastrointestinal issues, Reagan Sarver suffers from migraines. She has also spent her young life dealing with Primary Immune Deficiency Disease, diagnosed at age 4, and had her tonsils and adenoids removed at age 3 before undergoing sinus surgery two years later.
Formerly a bookkeeper at an Ahwatukee church, Stam is now employed with Intel as a financial analyst. She said even with the increase in salary, life has been a struggle as a result of her two daughters’ need for specialized medical help.
“Yes, the salary is better, but I still live paycheck to paycheck,” she said. “And to be quite honest, I have been struggling a lot lately with everything that has been going on.
“I truly don’t understand why my girls can’t get better. My heart breaks a little more each day.”
The Sarver sisters join Keira and Olivia Riley of Ahwatukee on Armer’s list of severely medically challenged children.
In 2020, the Riley girls were diagnosed with an extremely rare genetic brain disease. Their stories, as well as those of other Armer Kids are told on Armer- Foundation.org/ArmerKids.
Donations are needed for all these children and more as The Armer Foundation hopes to expand its reach in 2024.
“Every donation enables us to ease the financial burdens that can overwhelm families battling extreme medical conditions,” said Jennifer Armer, who cofounded the foundation with her husband Matt.
“Together, we can ensure no child’s family has to endure the stress of medical bills while tending to their children’s road to recovery.”
Armer Foundation for Kids hosts fundraisers and blood drives open to the community throughout the year.
One of the nonprofit’s major fundraisers will be held 6-10 p.m. Friday, Jan. 12, when the Armer Foundation’s annual Dancing with the Stars competition will transpire at Fred Astaire Dance Studio, 3820 E. Ray Road, Unit 2, Ahwatukee.
The evening features local residents and professional dancers who will be raising funds to help local families in need. Tickets are available on the nonprofit’s website ArmerFoundation.org