A 1-year-old boy born with a developmental disorder recently underwent his second open-heart surgery, and his family is grateful for the support this community has shown over the past year.

Amari was born April 13, 2022, to parents Jessica Kelly and Ramone Connor.

As Kelly described, concerns about Amari’s health began well into her pregnancy, as a major problem with his heart was discovered at 29 weeks.

“He ended up having a hole in his heart, which alerted further testing,” Kelly said. “So we got more heart tests and they determined that he had heart defects, specifically an interrupted aortic arch and a large VFV between the bottom two chambers of his hear.”

It was later discovered that Amari suffers from 22q11.2 deletion syndrome, also known as DiGeorge syndrome.

Kelly explained that DiGeorge is a developmental disorder similar to Down syndrome, and while it’s the second most common such disorder, it’s far less known.

Symptoms of DiGeorge are varied, with some cases not showing any apparent symptoms. Heart defects such as those Amari has dealt with are common, as are a cleft palate and poor immune system.

“With DiGeorge, the abilities are all over the board, so we just don’t know, really, what his life is gonna look like. It’s just what he decides to do,” Kelly said. “But what we’re dealing with right now is really just the heart stuff.”

Just a week after he was born, Amari returned to the hospital for his first open-heart surgery. Kelly recalled it as a very difficult time, with an 11-hour surgery followed by four days on life support.

From there, Kelly spoke about how the family made frequent visits to Cardinal Glennon Children’s Hospital – nicknamed Hotel Glennon because of these visits.

Over the last year, Amari has dealt with seizures and continued heart problems that have seen his oxygen levels around 70 percent, leaving him with tremendously little energy.

Though his growth has also been slow due to the heart problems as well as difficulty eating, his family has done its best to take care of him.

Kelly said their home is often visited by physical and speech therapists, and while he certainly has bad days, he generally looks to be in good condition.

“He’s a sweet, happy, awesome boy,” Kelly said. “Everybody that sees him, they just say ‘Oh my gosh! You would never guess there was anything wrong with him!’ He’s always so happy, and he looks, physically, good.”

Kelly said she’s aware of one other family in the community that’s also living with DiGeorge, and given how little awareness there is of the condition, she’s happy to have her family serve as an example that the syndrome can be lived with.

“People don’t really know a lot about it, and I definitely want to be somebody that, if somebody else finds out they have it they’re like, ‘Oh well, we know another person around who’s dealing with it too,’” Kelly said. “It is kinda rare, so I feel like the more it’s talked about, the better it is.”

Kelly has largely been the one to take care of Amari. 

She left Human Support Services – which she described as her “favorite place on Earth” – during her pregnancy, and has since remained at home to take care of Amari, though she does bring him along when she’s able to clean houses for some extra money.

While Kelly spoke positively about getting to experience a little bit of her dream of being a nurse, she did say the drop from two to one sources of income has been more than a little rough.

Fortunately, the family has received a substantial amount of support from friends, family and others in the community.

Kelly noted how impactful it has been to have folks bring her family meals or pay bills, as it’s nice to simply have one less thing to worry about here and there.

Other fundraisers have also taken place in the community in support of Amari.

The family served as one of the beneficiaries of “Swing for Monroe County” last year. Burnt Silk Screenprinting & Boutique hosted a T-shirt fundraiser last year and another one recently. Local realtor Monica Schmidt has served as guest bartender at Pie Hard Pizzeria with proceeds going to the family.

“I couldn’t have done this last year without everybody, and I can literally feel the prayers holding me up,” Kelly said. “I don’t have any other choice but to hang in there, so we’re gonna just get through it.”

Most recently, Waterloo resident Lori Weltig donated a table for the family to raffle.

Weltig said she wanted to offer the family whatever she could after the great deal of help they’ve given her over the years, from a tremendous amount of support following her son’s severe injury in a four-wheeler crash to Kelly personally getting her an outfit and jewelry for a first date when she had nothing else to wear.

She expressed deep gratitude for the kindness they’ve shown to her and said she can relate to what Kelly has been going through the last year, adding, “I know God places people in our lives at the perfect time for the perfect reasons.”

“I remember the trips, the ambulance to the ER for seizures which, on her (Facebook) posts, she’s posted about those, and it’s heart wrenching,” Weltig said. “It’s scary. It’s fearful. I relate. And as a mom, my heart breaks for her that she has to go through this. I hope it brings her comfort as it did me and other moms who reached out to me that she’s not alone. We don’t raise our children alone. It takes a village. It truly does. And it takes our experience, good and bad, to help each other so that we don’t feel alone.”

Amari’s second open-heart surgery was scheduled for Tuesday, and Kelly is hopeful about his future.

On Wednesday morning, Kelly reported via Facebook the 11-hour surgery was successful.

She added there was no need for “ECMO” (extracorporeal membrane oxygenation), a form of life support used for patients with life-threatening heart or lung problems.

“There are still issues they have to work out though, so please continue to pray,” Kelly wrote in the Facebook post. “We are tired, and so so thankful.”

The surgery should improve Amari’s health in a number of ways – chiefly getting his oxygen levels to where they should be.

“After this next surgery, he’ll have what’s considered a repaired heart, so it’s as repaired as it will ever get,” Kelly said. “I’m hoping that he has a lot more awake time. And he’s still a really little guy, so I’m hopeful that he’ll be stronger to be able to grow a lot more, hopefully continue to work on trying to sit up.”

As DiGeorge is a lifelong condition, it’s still unclear what symptoms or complications Amari will have to contend with through his hopefully long and happy life.

Those interested in donating to Amari and his family can do so through the Monroe County House of Neighborly Service which Kelly said has an account open in their name.

For more information, call 618-939-8900 or visit monroecountyhns.org.