At just 5 years old, Jack Reaves has had to fight harder than some people ever will.
Jack has special needs, but no one knows what he has because he has an undiagnosed neuromuscular disease.
The disease makes Jack’s muscles extremely weak and all his muscles are affected.
Jack has trouble with people understanding his speech because the tongue is a muscle. He is 100 percent tube fed because he’s unable to swallow.
“His brain is completely fine. He’s a very typical 5-year-old little boy. His speech is just very hard to understand, it’s difficult for him to move and he can’t eat by mouth,” Jack’s mother, Brenna Reaves, said.
Jack is a twin, and his parents, Zac and Brenna Reaves, didn’t know there was anything wrong with one of their babies before he was born.
Jack’s twin, Lily, was born first then Jack, but Brenna said they noticed immediately that he couldn’t “move at all like a normal baby and hardly moved at all, actually.”
They also noticed he couldn’t swallow, cough or hold his food down.
“It was scary, but every day he got a little stronger, which was nice,” Brenna said.
Since Jack’s disease hasn’t been diagnosed and they are unsure what he has, doctors were unsure what he would be able to do. No one told the couple Jack wouldn’t be able to do certain things, but they did tell them they were unsure if he’d even live, nonetheless walk, talk, sit up, think for himself, read, sign or hold his head up.
“It was just everything. They didn’t know what he had so they didn’t know what he was going to be able to do,” Brenna said. “I just remember her telling me at one point she didn’t know if he would ever hold his head up because he just—for a long time, he was just like a little baby. His head would just fall to the side.
“He has done everything they said they were unsure he’d ever be able to do.”
The Reaves said they know they have to wait for another child like Jack to be born with the same symptoms before a diagnosis can be made.
Lily is Jack’s advocate and best friend.
“Like any other twin, but probably even more so because she does for him a lot of stuff he can’t do,” Zac said.
She also is the translator for Jack most of the time because she understands what Jack is saying at least 90 percent of the time, Brenna said.
“They fight like normal brother and sister, but they do everything together,” she added.
Jack also is very social.
“Where most people would think he would shy away from other kids because he is becoming very aware of his body, he doesn’t. He has a best friend at school named Colton and Colton is a huge part of Jack’s life. He loves to be the center of attention and is somewhat of a class clown. Sometimes he has to be told to sit down and be quiet. He likes to be center of attention while Lily does not.”
Jack even showed off his “SpongeBob SquarePants” laugh during the interview on Monday.
Jack is a student at Prairie View Elementary and goes to half-day Pre-K.
“It’s been a very smooth transition. We’ve been very impressed with Mustang schools. We’ve only lived here three years and so I was nervous, but they have accommodated and welcomed Jack so very well. He gets most all of his therapies in the Mustang school system—speech, PT and OT. The doctor has requested that he has his own personal aide to help him and manage his airway, and she has been a God send. She’s lovely. We love it,” Brenna said. “I hope next year he does well. He fatigues quickly and next year is all-day-kindergarten, so we have a little bit of concern about that. I think it’ll be a slow transition but I’m hoping that he will do well.
“The most important thing about Mustang is he is not treated any differently. He is integrated in a very typical, normal pre-school class as if nothing was wrong with him. It’s not a special needs class specific, they don’t single him. He is treated and expected to do everything else that the children do and he’s not given any special treatment, which we like.”
Zac chimed in saying he likes that Jack isn’t treated any differently because “prejudice is a taught behavior.”
“Yeah, the other kids are just so accepting of him,” Brenna added. “The first time I ever fed Jack in school when we were running a little bit behind, he was concerned and wanted to kind of be in the corner. The other kids came over asking ‘what is that?’ and we explained it and they just wanted to know what it was and they were like ‘oh, okay.’ Nothing was said after that. Now if I feed Jack they’re just like ‘what’re you eating, Jack?’ Kids can be really mean, but if you teach them at a really young age that people can be different then they’re more accepting.”
Jack’s favorite thing to do is play with trains. He also loves to play outside with Lily in the treehouse Zac made them for their birthday and go camping and hiking with his family.
Zac carries Jack on his back when they go so it’s not as hard on him. For Jack’s Make a Wish trip a couple of years ago, they went to Yosemite National Park to hike.
Although Jack acts like a normal 5-year-old boy, simple things such as a cold or allergies can be a life or death situation for him.
“What’s just a little cold for somebody else is like a fight for his life,” Zac said.
It becomes difficult to manage his secretions, and it becomes a lot of nursing interventions, breathing treatments and chest percussion therapy.
“We have to suction his throat on the really bad days and that wears him out completely,” Brenna said.
At night, Jack is dependent on sleeping on a BiPAP that keeps his lungs open throughout the night to make breathing easier.
Jack has four siblings, including Lily.
Brenna said the most difficult part for the family has been adjusting to a child with special needs.
“Zac and I cannot go take Jack to a normal daycare and both go work at the same time and come home and cook dinner. We work complete opposite shifts,” Brenna said.
Brenna works nights at Integris Health Inc. as a labor and delivery RN. Zac is a day-time critical care paramedic/RN at Normal Regional Hospital.
“It’s like working in a hospital. I was up five times over night with feeding pump alarms and his BiPAP alarm giving an alarm. You just have to get up and be on duty 24 hours a day,” Zac said.
Every family trip or even just a regular date night “has to be planned very meticulously,” Brenna said. Jack has two nurses who have to come to babysit, and family trips can’t just be “let’s pack and go,” she added.
The Reaves must do their research about where hospitals are and if they’ll have Wi-Fi and cellphone service. They also have to have all of Jack’s medical equipment and be prepared for an emergency.
“That’s why we got the camper,” Zac said.
Although it’s not always easy, Brenna said just watching Jack thrive and watching her family adapt has been miraculous.
“It gives you a whole different perspective on life,” Brenna said. “His brothers and sisters, I don’t think they’d probably tell you, but when other children say something is difficult or they’ve had a hard day, our children have a whole different perspective of what a hard day is.
“Just watching Jack thrive. He’s just a normal little boy trapped in that little crazy body. We didn’t know at one point if we’d get to take him home from the hospital or if he’d live past one because he was just so sick all the time.”
Brenna said Brittany’s Play Adventure, the new all-inclusive, Americans with Disabilities Act (ADA) compliant playground In Mustang, is something they’re extremely excited about.
“We wanted to be a part of that from the get go and our schedule just hadn’t allowed us, but I have been following her story and supporting her fundraisers,” Brenna said. “Jack is super excited. He cannot climb, so for that place to have ramps and is accessible to everything — that’s amazing.
“I drove by [the new park] yesterday and showed [Jack and Lily] everything and they were like ‘whoa!’ and Jack kept saying ‘that’s so awesome!’ That’s exciting for Mustang to have. I’m glad that all of that is happening right now.”
Zac and Brenna recently renovated their house to make everything more accessible for Jack if he needs to be in a wheelchair fulltime. Jack uses a wheelchair for long distances, so he used his wheelchair Sunday in the Children’s Oklahoma City Memorial Marathon.
The Reaves mainly want to raise awareness for neuromuscular diseases and show that it’s difficult, but Jack is just like any other 5-year-old boy.
At just 5 years old, Jack Reaves has had to fight harder than some people ever will.