Frequent trips to The Children’s Hospital of Philadelphia every other month have not dimmed Paxton Rumensky's abundant six-year-old energy.
He loves to play with his two younger brothers, Cam and Maddox, and the family's new puppy — Benedict, or Benny, for short.
On a recent afternoon the Dickson City boy bounded down the school bus steps into his mother's arms after a field trip. He rolled around on the ground with Benny, chased the puppy with his brothers and let the puppy happily wriggle all over him.
“We don't want him to feel like he's different and he's very special, like every kid is. But we don't want him to feel like he's limited to what he can do," mom Marlena Rumensky said.
Paxton was born with an abdominal wall defect called gastroschisis and spent six months in the hospital after his birth. He lives without most of his small intestine and colon and does not receive enough nutrients from food, so he must receive a daily IV of Total Parental Nutrition, or TPN.
Because of that, there was something Paxton's family was afraid to do until this spring: Take him on a plane trip.
“We've never flown with him before, because that was a concern of ours, just flying with his TPN, and making sure we have all of his supplies,” Marlena Rumensky said.
In addition to those supplies, Paxton has a central line in his chest that goes directly to his heart and has a gastrostomy tube (g-tube) to his stomach.
In April Paxton and his family were able to take what Marlena Rumensky called a “once in a lifetime” trip to Walt Disney World in Orlando, Florida thanks to Make-A-Wish.
“They made sure that we got his supplies down there, and everything was seamless. It was so easy, and otherwise it would have been a lot more stressful,” she said.
Paxton's medical team recommended him for the trip, which left the boy and his family with lasting memories.
“Sometimes I just gotta let the medical things be and just live life. That really came to me on the Make-A-Wish trip, to remember to do that every day,” Marlena Rumensky said. “Those things are important, but it's also important to enjoy yourself and just let him be and let him have fun.”
Paxton did exactly that, starting with the flight.
He gleefully recalled sitting in the cockpit and helping the pilots “hit buttons.”
Make-A-Wish
Make-A-Wish is a national foundation that “creates life-changing wishes for children with critical illnesses,” according to their website.
Dana Antkowiak works as the director of marketing and communications for Make-A-Wish of Greater Pennsylvania and West Virginia. She said referrals can be made between ages two and a half and before a child turns 18.
“They have to be diagnosed with a critical illness, and we define that as something that is progressive, degenerative or malignant, that is placing the child's life in jeopardy. One of the biggest misconceptions about Make-A-Wish is that a child must have a terminal diagnosis or be terminally ill, and that is not the case,” Antkowiak said.
Paxton Rumensky's condition is critical, and he'll be living with it for the rest of his life, but is not terminal his mother said.
Antkowiak's chapter granted 44 wishes in their Northeast Pennsylvania region last year, which includes Bradford, Lackawanna, Luzerne, Lycoming, Monroe, Pike, Sullivan and Susquehanna counties.
Nationally, Make-A-Wish granted 15,700 wishes last year.
Antkowiak said Disney is her chapter’s most popular wish, and it makes up half of wish trips nationally.
“You have people say that you get your pixie dust from Walt Disney World, but being with these Make a Wish families, I get nonstop pixie dust from being with them, and I get to give it back to them as well,” said Phelicia Blake, a Walt Disney World ambassador.
The Rumensky family was Blake’s first Make-A-Wish family.
“He created a core memory for me to be a part of that,” Blake said.
Disney grants access to a special ‘Wish Lounge’ for Make-A-Wish families, which Paxton and his family got to see after new renovations.
“The Wish Lounge is there for any use that those Make-A-Wish families have. The Make-A-Wish Lounge is really for you to take a moment to recharge and do anything that you need in there, whether it is to take a breather or you need to take some medicine or change anything,” Blake said.
Paxton’s wish trip
Make-A-Wish covered all travel expenses for the Rumensky family. Paxton traveled with his parents, Marlena and Paul Rumensky, and his younger brothers.
“With travel wishes, they are not meant to be a burden to our families. So we do cover airfare, accommodation, spending money. It's all taken care of because it is supposed to be stress free,” Antkowiak said.
Marlena Rumensky said her son told her he wanted to stay in Disney forever.
“We really just did what he wanted to do on the trip. He loves rides. He is fearless. He went on all the rides, met all the characters he wanted to meet, and he never stopped, never told me he was tired, and he had a huge smile on his face the whole time,” she said, smiling as she watched her son run around the house with his brothers and their new puppy.
Paxton Rumensky listed all the parks he visited: “Sea World, Magic Kingdom, animal kingdom, Hollywood studios, Universal, Universal Studios.”
He said his favorite part of the trip was "going on rides.” His favorite rides in Disney were Expedition Everest and Space Mountain. And at Universal, it was, “Going on the minion rides.”
And at Universal, he used his Harry Potter wand to cast spells.
“Abracadabra! Alakazam,” he shouted in demonstration.
'Just let him be a kid and enjoy the rides'
The trip was not without vigilence and concerns.
Paxton wears a central line vest made by his mother. It holds the line, protecting it from being pulled on or getting caught on anything.
Paxton can’t get wet, so he wears a bib to protect his chest from water dribbling down his chin.
His mother cares for the central line by regularly changing the dressings. She mixes his TPN and starts and stops his infusions. A nurse monitors him each night and at school in case there are any complications.
But, as his mother said, the family's goal is to ensure Paxton doesn't feel limited in his activities.
"We've really enforced that from the beginning. And he doesn't. He just lives his life and plays with them [his brothers], but also very cautious of the things that he has to be cautious about, which is good.”
Marlena Rumensky expressed gratitude to Make-A-Wish for giving her a positive outlook on her son’s health.
“We make sure we have those things in place so then he can just go be a kid,” she said. “We just want him to be a kid, and we'll worry about those things. It was nice at Disney World to just let him be a kid and enjoy the rides and have fun.”
Reflecting on the first few years of his life, Paxton's mother can’t believe all her young son has overcome.
“He's really doing very well, all things considered. To think back at that time, I never envisioned him running around and playing t-ball, and riding rides. I thought maybe he would get sick on rides," she said.
"So to see how much joy he gets from all those things and that he's able to do them, it just means so much to us, and it makes us very happy.”
