Chasing the dawn | Corewell Well being

Three-year-old Dawsey Vainner likes to go for walks along with his father Dan and have a look at the timber.

What he loves much more than walks is watching the solar rise over downtown Grand Rapids.

He and his dad catch as many as doable.

They perch atop a hill on the West Facet of Grand Rapids and patiently await first gentle.

“The Highlands at Blandford Nature Heart is considered one of their favourite spots,” Dawsey’s mother Jenna mentioned. “We actually have a image body devoted to Dawsey dawn photos.”

Dawsey had a tough begin. He was identified with a number of uncommon circumstances that require common visits to the hospital.

At about 18 weeks gestation, Jenna had an ultrasound at Corewell Well being’s Spectrum Well being Maternal Fetal Medication Workplace.

Docs suspected she could have had a blood clot within the umbilical twine, however as a substitute it confirmed that Dawsey had an omphalocele–his bowel was outdoors of his stomach.

He additionally had polydactyly, or further digits hooked up to his pinky fingers.

“Since there have been two development abnormalities, they thought it could be genetic,” Jenna mentioned.

The household had each genetic take a look at obtainable carried out, however all got here again regular.

“At that time it was only a ready recreation,” Jenna mentioned. “We simply needed to wait and see how he developed.”

At his personal tempo

Dawsey spent his first month of life within the Gerber Basis Neonatal Heart (NICU) at Corewell Well being’s Helen DeVos Kids’s Hospital, making progress every day.

Docs efficiently eliminated the additional digits on his fingers and repaired the omphalocele, however he additionally had points feeding.

“Every single day was like studying one thing new about him,” Jenna mentioned. “He had a rougher begin to life I’d say.”

They made visits to cardiology, nephrology, neurology and neurodevelopment and different departments.

“We noticed a number of specialists in his first months of life,” Jenna mentioned.

Then the pandemic hit, making appointments much more tough to juggle.

“After all, this was the identical time Dawsey had the worst feeding points up to now,” Jenna mentioned. “He refused to eat and was dropping pounds. It was a really tough time.”

This paired with the truth that he couldn’t maintain his head up on his personal or transfer his arms towards gravity because of low muscle tone made life a problem.

Dawsey went again to genetics for extra testing and had complete exome testing carried out–the ultimate overarching genetic take a look at possibility.

“The problem is a few individuals get no reply, and others see a definitive prognosis. And it takes months,” Jenna mentioned.

The prognosis they wanted

The Vainner household was one of many lucky ones to obtain a definitive prognosis.

At a 12 months and a half, Dawsey was identified with Au-Kline syndrome, an especially uncommon illness that’s identified to have an effect on about 80 individuals whole worldwide.

Au-Kline syndrome typically presents with developmental delays and moderate-to-severe mental disabilities. Sufferers with this situation usually have weak muscle tone and might seem with facial options which will embody a big and deeply grooved tongue, a broad nostril with a large nasal bridge, and a downturned mouth.

Better entry to genetic testing has the variety of individuals presenting with this situation rising.

“It’s at all times a bit onerous to get a prognosis of one thing, however after the preliminary tears I used to be actually relieved that we obtained a solution,” Jenna mentioned. “Earlier than this we have been always dwelling in limbo not understanding what life would appear like for Dawsey.”

The household since joined a gaggle on social media for fogeys and grandparents of youngsters with Au-Kline syndrome internationally.

“Folks put up updates and issues their children are conducting. It’s a actually constructive factor for us to lean on, and we actually have a couple households we speak to repeatedly on Instagram. It’s good to have somebody to bounce concepts off of,” Jenna mentioned.

Jenna and Dan are glad they will discuss Dawsey’s advances.

“It’s wonderful to see his progress from six months to now,” Jenna mentioned. “I’m excited to see how a lot all the completely different therapies will additional profit him in the long term.”

Studying his surroundings

Dawsey is a really glad child and is continuous to be taught his surroundings. He’s realizing he can crawl and go get issues and even ask for issues.

He likes to level at issues individuals are consuming. And he likes to lick meals.

“Barbeque potato chips and French fries get him so excited,” Jenna mentioned. “He claps and smiles, even when he can’t eat them.”

Dawsey is opinioned and loves books.

“He loves Little Blue Truck or Faucet the Magic Tree, something interactive the place now we have to faucet the web page,” Jenna mentioned. “He’s additionally obsessive about Clifford.”

Jenna works at a library and mentioned the truth that he loves books warms her coronary heart.

“He loves to tug books off the cabinets, so we set them on the bottom for him,” she mentioned. He then crawls to his favourite books.

“We’re so used to him being the child that we have to carry over or assist work together with issues, however now he has grown a lot,” she mentioned.

Dawsey is engaged on studying signal language in addition to an iPad program in hopes to assist his communication skills, she mentioned.

‘As distinctive as his prognosis’

Dawsey visits the hospital as soon as every week with bundled appointments for speech, occupational remedy and bodily remedy.

“His bodily therapist has been so useful,” Jenna mentioned. “He is aware of Dawsey so properly and has identified him since he was simply six months outdated. It’s so good to have that connection.”

Andrew Harrington PT, DPT, board-certified pediatric medical specialist with Helen DeVos Kids’s Hospital Rehabilitation Companies, had good issues to say about Dawsey’s progress.

“Dawsey possesses many qualities which are as distinctive as his prognosis,” he mentioned. “He’s a job mannequin for anybody he encounters to joyfully persevere by means of any challenges they could face whereas slowing down to soak up the on a regular basis treasures of life similar to watching a chook flying overhead, studying a very good guide or taking in a dawn.”

Harrington and Dawsey work on strolling on the treadmill, Dawsey in his LiteGait walker and sneakers with yellow lightning bolts.

They peek out the home windows at site visitors as Dawsey takes steps.

“We’ve been engaged on serving to him stand extra independently,” Harrington mentioned. “I’m giving him much less help and he’s in a position to stand at a desk along with his arms now. He’s sitting up, crawling, and shifting his legs and arms all over.”

Harrington mentioned he by no means places limits on what Dawsey goes to perform sooner or later.

“We have fun each little success and sit up for what’s to return.”