Jeanie and Bruce Johnstone and son, Landyn at their Smyrna home. (Delaware State News/Marc Clery)
CLAYTON — He toddles and climbs around the living room nonstop for several minutes, then makes a run at the stairs before being corralled by an attentive parent,
Nearly two-year-old Landyne Johnstone smiles constantly and has clearly mastered the words “mama,” “dada,” and “puppy.”
When third-grader Blake walks through the door after a day at Sunnyside Elementary School his younger brother immediately lights up even more, speeding toward him for a shared hug.
Landyne’s high energy comes from more than just being a typical active boy, though, and the smiles won’t last.
“He never stops moving because of all the steroids he’s taking,” his mother Jeanie Johnston said on Wednesday afternoon from her home in the Providence Crossing development.
Every couple minutes or so Landyne also coughs deeply or gags, reacting to his swollen throat area that regularly threatens his breathing. He’s been diagnosed with Eosinophilic Esophagitis, which flares enough to require hospitalization every 12 to 14 days.
Jeanie and Bruce Johnstone and son, Landyn at their Smyrna home. (Delaware State News/Marc Clery)
Steroids used to treat the EE triggered a yeast infection from Landyne’s vocal cords to colon, and contributed weight to his moderately chunky 29 1/2 pound frame.
He screams a lot during the day, too, when migraine headaches arrive. He awakes at least twice nightly due to rising cranial pressure in his head and breathing difficulties.
Since being born at 33 weeks weighing just under five pounds, Landyne has experienced continuing medical challenges that would stagger any family.
On Sunday, Camden Wyoming Moose Lodge will host a quarter auction benefit for Landyne’s medical bills. Doors and the kitchen open at 1 p.m., with the auction at 2 p.m.
The event will be held at 760 Moose Lodge Road in Camden. Food and beverages will be available for purchase.
For more information or to contribute, contact Mrs. Johnstone at 382-3181, JC2486@outlook.com, or on Facebook – Landyn’s Fight for a Normal Life.
A GoFundMe account has been established online at gofundme.com/landynjohnstone15.
Kidney, brain surgeries
Just six weeks after birth on Jan. 27, 2015, Landyne underwent the first of six surgeries in eight months to address severe kidney blockage. Twice, the organs were completely reconstructed and he was left with 25 percent function in one, 30 percent in the other, with no hope of ever having them fully operational.
“For a while we didn’t think we would ever bring him home,” said the 30-year-old Mrs. Johnstone.
Once their baby finally left the hospital, Jeanie and husband Bruce noticed that he regularly slammed his head into the ground or shook it forcefully while crying out in pain at home.
Soon afterward, Landyne was diagnosed with Metopic Craniosyntosis with trigoclephy — his brain was growing into a developing skull that wasn’t keeping up. High cranial pressure caused constant pain that still exists today.
Brain surgery followed, and doctors broke bones in his head several times while moving his eye ball and socket for a more natural fit. He has 12 plates in his skull and a still noticeable but fading large scar line to show for it.
“The most challenging thing is watching him struggle,” Mr. Johnstone said. “You never want to see your child hurting and you always want to somehow switch positions with them, but that you can’t.”
Landyne’s development was arrested, requiring heavy doses of speech, occupational and physical therapies at Alfred I. du Pont Nemours Children’s Hospital in Wilmington.
Five respiratory infections in two months followed Landyne’s first extended time outside
The litany of problems wasn’t complete, and a diagnosis of photophobia — high sensitivity to light — followed.
“We could not take him outside for weeks,” Mrs. Johnstone remembered.
“His migraines were so severe he just screamed all the time.”
The couple is monitoring its son for possible autism after he exhibited a couple signs, and has detected a high sensitivity to sound.
“He’s growing and developing, but we have to figure out a way to get all his conditions under control,” Mr. Johnstone said.
Regular hospitalizations
All together, the Johnstones lived for long stretches in four hospitals in 20 months as Landyne underwent 12 surgeries and over 20 intubations.
The family estimates each hospitalization costs between $1,800 and $2,500 and there’s no letup in sight. The necessary care at Children’s Hospital of Philadelphia has been top notch, they said, but comes with a steep financial cost.
Mr. Johnstone, 33, works with Amtrak in Bear rebuilding cars, while his wife operates an in-home daycare for seven children during the week.
The medical bills are overwhelming, however.
“We have $200 in our bank account, the mortgage is due tomorrow and we’re saying a lot of prayers,” Mrs. Johnstone said.
She added that the family can’t afford to pay for any counseling, and her post-traumatic stress disorder and anxiety disorder are quelled by anti-depressants. Her father died when she was pregnant with Landyne and she said a close family member turned to heroin and added to the long list of daily concerns.
Through its Child Watch program, the State of Delaware evaluates Landyne’s condition every six months, producing a 10 to 12 page report each time.
The couple who first dated at Polytech High in Woodside admitted to growing apart during the struggle, but each have worked to gain a better understanding of their partner.
“We didn’t know how to communicate because we were stressed all the time,” Mrs. Johnstone said. “It took until now really after we realized we have to find a way, that even though we do it differently we have the same things in mind.”
Older brother Blake was challenged by his parents’ regular absences at hospitals for more than a year and so much necessary attention paid to Landyne.
“I think he felt that the new baby was here and ‘now I don’t matter as much,” Mr. Johnstone said.
Now, however, “those two boys are inseparable. If one says something to the other, he comes running.”
Despite the painful maladies, Landyne often displays a warm personality that comes shining through.
“He’s always happy through everything and that’s what gets us through it,” Mrs. Johnstone said. “The doctors can’t believe it because they understand the severity of what he endures.
“When he’s struggling we can see it, we know. He shows signs but doesn’t really want to show it. He just wants to go.”