PAXTON — Emma Elsey may be only about half the size of her peers at Clara Peterson Elementary School, but her courage measures off the charts.
Diagnosed shortly after birth with Noonan syndrome — a genetic disorder that prevents normal development in various parts of the body — the 7-year-old girl from Paxton has endured numerous surgeries and hospitalizations, is sometimes teased by her fellow students, and feels disappointment every time she goes to an amusement park and is unable to go on rides meant for kids her own age.
Even so, the spunky little girl has maintained her bubbly personality. And medically, she has defied all odds as she prepares to enter the second grade as a true medical miracle.
“The doctors never thought she would eat; they never thought she would walk; they never thought she would talk,” her father, Nick Elsey, said. “They basically thought she would be little (in stature) and not really be able to do much of anything. She’s proven them wrong every single time, though.”
While Emma may still be small compared with her peers, she can now do practically anything a typical kid her age does, added her mother, Jill Elsey.
“Although she may fatigue faster than her peers, it in no way hinders her desire to master physical tasks,” Jill Elsey said. “She continues to push herself physically through skateboarding, wall-climbing, soccer, gymnastics, swimming, basketball, rollerskating, bicycling, and possibly wrestling in the fall. ... She is an avid reader, enjoys singing, and her laugh will fill your soul with joy.”
Things are indeed finally looking up for Emma, who couldn’t be happier after receiving one of the coolest birthday gifts any youngster could get.
The best birthday
For Emma’s seventh birthday on July 28, a fellow member of the Elseys’ church — the Christian Life Church in Rantoul — organized a motorcycle rally, allowing Emma a chance to ride through Paxton with her grandfather and mother on a three-wheeled motorcycle.
Organizer Mike Adwell said he initially expected perhaps only four or five fellow members of the American Legion Riders Post No. 568 in Gibson City to participate. But, to his surprise, some 45 motorcycles turned out to celebrate Emma’s milestone.
“There were a lot of people there riding with us who had no clue who (the Elseys) were or where they were from,” Adwell said. “We’ve done some great things (as the Legion Riders), but this was really over the hill.”
Emma loved the experience, sharing hugs and high-fives with the bikers, some of whom also brought her gifts. The motorcycle ride ended at Paxton’s swimming pool, where a birthday party was held.
“It was amazing,” Nick Elsey said. “It brought tears to my eyes.”
Emma’s mother told Adwell that Emma loved the motorcycle ride so much that after she arrived home from her birthday party, she asked her mother, “Do you think we could do that again?”
Adwell later told Emma’s mother he would happily give her another ride anytime.
It was not the first time that the Paxton community had stepped up to support the Elseys. In March 2013, Deane and Cordelia Geiken organized a luncheon to raise funds to help pay for Emma’s medical bills that remained after she had heart surgery.
“It was a tremendous relief for our family,” Jill Elsey said, “as the stress of raising three children on one income — as well as thousands of dollars in medical bills and transportation/equipment costs — was daunting, to say the least.”
Other fundraisers also were held by family and friends to help the Elseys pay for ongoing costs associated with Emma’s medical, transportation and supply needs.
“We will forever be grateful to Paxton and the surrounding areas for their generosity of prayers and financial donations,” Jill Elsey said.
The early weeks and months
Emma’s emergency C-section birth followed a complicated pregnancy, her mother said. After Emma arrived weighing 7 pounds, 6 ounces, and measuring 20 inches, doctors immediately noted abnormal physical features of low-set ears, webbed-like features from her neck to shoulders, a broad rib cage and low muscle tone, Jill Elsey said.
She also was born with a heart condition and without a muscle in her left eyelid, among other complications. She also had difficulty with feeding.
“Eighteen hours after being born, it was blatantly obvious Emma was not doing well,” Jill Elsey said.
Emma was then transferred to Carle Foundation Hospital’s newborn intensive care unit (NICU) — the start of “a very long journey for us,” Jill Elsey said.
During Emma’s five weeks in the NICU, doctors found three abnormalities in her heart. She was discharged from the NICU after doctors placed a feeding tube directly into her stomach.
In December 2012, when Emma was four months old, she was referred to OSF St. Francis Medical Center for second opinions on what was causing her continued difficulties with feeding, weight gain, growth delays and developmental delays.
“Immediately, the cardiology team diagnosed her with Noonan syndrome and discovered she also had pulmonary valve stenosis (severe) and hypertrophic cardiomyopathy,” Jill Elsey said.
The following month, Emma underwent an eight-hour heart catheterization procedure to enlarge her pulmonary artery that was narrow and stiff, while surgically separating her pulmonary valve that had fused into one piece. Surgeons also explored the severity of the three other defects in her heart found in previous echo cardiograms.
After surgery, Emma was sent home, where she received ongoing home therapy for the next 2 1/2 years. That was followed by three years of therapy in the school system to address muscle, coordination and endurance strengthening.
Other surgeries followed in 2013, including surgery to implant a suspension system in Emma’s left eye lid/brow that allowed her to open the lid through raising her left eyebrow. A second surgery was done on her eye in 2018. Today, Emma continues to receive patching to the strong eye to promote improved vision in the weaker eye due to lack of use the first 10 months.
Another surgery was in November 2013, when tubes were placed in both of Emma’s ears to treat undetected ear infections caused by narrow ear canals from her low-set ears.
“A 20% hearing loss was found in her left ear that had been more impacted by the infections,” Jill Elsey said. “Doctors have determined she will most likely need tubes in both ears the rest of her life to allow for adequate drainage of fluid.”
Back to today ...
Today, Emma “has ‘graduated’ from her various therapies with high praises and has the spunk of a small army,” her mother said.
“She is intellectually keeping in step with her peers, despite her initial delays developmentally,” Jill Elsey said. “Though her size is small for a typical 7-year-old, she is in the 50th percentile on the Noonan Growth Chart scales, meaning she’s on the larger side of the norm.
“Her pulmonary valve stenosis is considered at 15% vs. the 75% prior to her heart surgery. The enlarged left side of her heart has healed itself. Doctors state it’s a miracle — they have no other explanation for it.”
“We cherish each day we have with her,” Jill Elsey continued, “because we know at anytime her challenged heart can be easily affected by various things such as viruses, growth spurts and sensitivity to temperature.”
Emma’s life, her mother said, shows that “God still performs miracles, that limits should rarely be placed on a child, and that a small community can play an important role in their members’ lives.”