Chasing the sunrise

Three-year-old Dawsey Vainner likes to go for walks together with his father Dan and take 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 potential.

They perch atop a hill on the West Facet of Grand Rapids and patiently watch for first mild.

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

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

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

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

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

“Since there have been two progress 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 sport,” 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 Foundation Neonatal Center (NICU) at Corewell Well being’s Helen DeVos Youngsters’s Hospital, making progress every day.

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

“Day-after-day was like studying one thing new about him,” Jenna mentioned. “He had a rougher begin to life I might 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 shedding 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 resulting from low muscle tone made life a problem.

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

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

The analysis they wanted

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

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

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

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

“It’s all the time slightly onerous to get a analysis of one thing, however after the preliminary tears I used to be actually relieved that we received a solution,” Jenna mentioned. “Earlier than this we had been continuously dwelling in limbo not figuring out what life would appear to be for Dawsey.”

The household since joined a gaggle on social media for folks and grandparents of youngsters with Au-Kline syndrome the world over.

“Individuals submit updates and issues their children are carrying out. It’s a actually constructive factor for us to lean on, and we also have a couple households we speak to commonly on Instagram. It’s good to have somebody to bounce concepts off of,” Jenna mentioned.

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

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

Studying his atmosphere

Dawsey is a really comfortable child and is constant to study his atmosphere. He’s realizing he can crawl and go get issues and even ask for issues.

He likes to level at issues persons 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 we have now 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 analysis’

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 nicely and has identified him since he was simply six months previous. It’s so good to have that connection.”

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

“Dawsey possesses many qualities which might be as distinctive as his analysis,” he mentioned. “He’s a job mannequin for anybody he encounters to joyfully persevere via any challenges they could face whereas slowing down to soak up the on a regular basis treasures of life resembling watching a chook flying overhead, studying a great 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 assist and he’s capable of stand at a desk together with his arms now. He’s sitting up, crawling, and transferring 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 look ahead to what’s to come back.”


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