Where Care Feels Close: Reece's Story

When Reece A. entered the world on April 25, 2021, his par­ents, Kathryn and Adam, found them­selves fac­ing more ques­tions than answers. Diag­nosed with a rare genet­ic con­di­tion, there was no clear roadmap for his life — only a path they would have to carve out togeth­er, one day at a time.

“He was born four weeks ear­ly after a nor­mal preg­nan­cy,” Kathryn shared. ​“I went into labor with him, and after a long labor, we end­ed up in an emer­gency C‑section. He was born in res­pi­ra­to­ry dis­tress. That was our first clue that some­thing was wrong.”

Reece was trans­ferred to Spring­field for advanced care, where genet­ic test­ing revealed a vari­ant in the RYR1 gene— his exact muta­tion of the gene came with no med­ical his­to­ry to guide them.

By three months old, Reece came home on a ven­ti­la­tor, depen­dent on a tra­cheosto­my tube for breath­ing and being fed through a G‑tube. The fam­i­ly soon con­nect­ed with spe­cial­ists in St. Louis, where Reece was offi­cial­ly diag­nosed with King-Den­bor­ough syn­drome, a con­di­tion so rare that Kathryn knows just a hand­ful of peo­ple world­wide who share it.

“I have three peo­ple that I’m in com­mu­ni­ca­tion with around the world who either have it or have a child with it,” Kathryn shared. ​“Reece is the youngest I’ve found, and he is the only one who isn’t walk­ing yet, so we have some hope there.”

Every mile­stone, no mat­ter how small, has been a cause for cel­e­bra­tion. The removal of Reece’s tra­cheosto­my tube in July 2022 marked a turn­ing point. In 2023, he grad­u­at­ed from using a G‑tube to eat­ing reg­u­lar food, his favorite being pep­per­oni piz­za. But as with any jour­ney, new chal­lenges emerged. The family’s cur­rent focus is on Reece’s sco­l­io­sis. ​“That’s just the jour­ney we expect with him. We face what’s in front of us right now,” Kathryn explained.

At three months old, Reece start­ed work­ing with Quin­cy Med­ical Group (QMG) Pedi­atric Ther­a­pist Julia Whit­tak­er, PT, to build strength and mobil­i­ty, while QMG Pedi­a­tri­cian Lind­say Brink, DO, pro­vid­ed ongo­ing care. ​“Cog­ni­tive­ly, he’s com­plete­ly on track. His lim­i­ta­tions right now are phys­i­cal. It takes strength for all of us to do every­thing we do in a day. But I nev­er real­ized how much we depend on our mus­cles until I had Reece,” Kathryn said.

In July 2024, Reece began aquat­ic ther­a­py at QMG, work­ing with Pedi­atric Phys­i­cal Ther­a­pist Saman­tha Wil­son, PT, DPT and Cer­ti­fied Occu­pa­tion­al Ther­a­py Assis­tant Ash­lee Simp­son, COTA/L, CPRCS. ​“We had been curi­ous for a while about how Reece would do in the water. He loves to swim, and that was a unique ther­a­py QMG offered,” Kathryn said.

For the first time in his life, Reece expe­ri­enced the joy of move­ment that many take for grant­ed. With Sam and Ashlee’s guid­ance, he learned to walk in the water, play­ing a game he loves – squish­ing bugs. ​“We are dinosaurs. We make the Earth flat,” Reece said.

His sco­l­io­sis is pro­gres­sive, and their doc­tor in St. Louis pre­pared Adam and Kathryn for the long haul and the like­li­hood of the con­di­tion wors­en­ing. ​“He said, ​‘We don’t expect it to get bet­ter; it will get worse. We’re just try­ing to see how much we can slow down the pro­gres­sion.’ Every time we go in for scans and x‑rays, we’re hop­ing to see how much we’ve slowed it down,” Kathryn said.

But at his most recent vis­it, some­thing unex­pect­ed hap­pened: the cur­va­ture of Reece’s spine had improved by sev­en degrees — a result they hadn’t thought pos­si­ble. ​“I 100% cred­it those results to the grace of God, QMG, and the inter­ven­tions of these types of ther­a­pies, because we hoped for zero change. When I hear the word improve­ment, that’s pret­ty mirac­u­lous to us.” 

With all the unknowns of Reece’s con­di­tion, the Kathryn and Adam were unsure if the resources and sup­port they need­ed were avail­able in Quincy.

“I even asked my hus­band at one point, ​‘Do we need to move some­where clos­er to a chil­dren’s hos­pi­tal?’ But it turned out we were the lucky ones being here because every­thing we’ve need­ed has been found just a few blocks from our home,” Kathryn said.

Kathryn reflects on how she embraces Reece’s mile­stones. ​“I think it’s easy to live with fear and anx­i­ety about what’s to come in Reece’s life. With the progress we’re see­ing dur­ing these ther­a­py ses­sions, I’ve real­ized I don’t need to wait for the relief of suc­cess. I can enjoy the jour­ney as much as the outcome.” 

Adam added, ​“We’ve learned to par­ent with the mind­set of nev­er want­i­ng to lim­it Reece’s progress. So if there is some­thing that can chal­lenge him or allow him to progress, we want him involved with it. We’re thank­ful for the resource that is Quin­cy Med­ical Group, which allows him to progress into a more vibrant human being.”

The sto­ry of Reece’s life is still unfold­ing, but every day brings new hope and new strength. In QMG, they have found a part­ner. ​“I think a lot of times, espe­cial­ly with par­ents of med­ical­ly com­plex chil­dren, advo­ca­cy can feel like it’s syn­ony­mous with fight­ing. But what we’ve found with Quin­cy Med­ical Group is that there are providers here who advo­cate along­side us, and we can trust them. I don’t have to go to them to fight for my son; I can go to them know­ing they’re help­ing fight for him, too.”

To learn more about the QMG Pedi­atrics team, click here or call (217) 222‑6550, ext. 3333. For infor­ma­tion about QMG Pedi­atric Ther­a­py ser­vices, click here.