Levi and his sister in stroller.

At the Ronald McDonald House you are more supported than you ever could be on your own

Siblings are the best medicine

*UPDATE*

Levi has received a NEW KIDNEY!!

About a month ago, Sarah received a call that Cook’s Children had found a kidney for her son. It was a Monday night, but Sarah did not miss a beat. She immediately strapped Levi and sister Lydia into their car seats for the two-and-a-half-hour drive to Fort Worth. On Tuesday morning, June 6, 2017, Levi was able to replace his bags and tubes for the kidney.

Since the operation, the Carson family has been staying at the House to make sure Levi’s body took to the kidney properly. And, guess what? So far, so good! Levi is reacting awesomely to his new kidney. He’s even given his new organ a name, Bob.

This week the family returned home. As we were saying our goodbyes, Levi was running around with his sister, playing with Mac and re-enacting clones from Star Wars. Sarah looked at us and said, “Yeah, the doctor said the new kidney would give him A LOT more energy.” With big eyes and a smile, she continued, “Let’s just say, it has!”

 

THE ORIGINAL STORY

When people see the smiley blond-headed Levi walking down the halls of the Ronald McDonald House, they would never guess there’s anything wrong. He’s talkative, yet ever so mellow. He’s tiny, but never overseen. He’s really just your typical 5-year-old boy, who loves riding his bike, playing with his little sister and pretending to be Ironman at times. It is not until he walks up to you, lifts up his shirt, and begins telling you, “this pump is my… it does this… and this is my IV for… it does this… and these are my bags… they are new, because…” that you realize he is a real life superhero.

Levi was born on November 14, 2011 with only one kidney. He weighed four pounds and six ounces. However, the doctors noticed his kidney was holding an excessive amount of fluid. After draining the fluids, he weighed only four pounds and one ounce. Immediately, Levi was life-flighted to a Kansas City hospital where his parents, John and Sarah, met him. Soon after arriving, baby Levi was diagnosed with End Stage Renal Disease and Klinefelter’s Syndrome. It was here, the Carson family began their five-year-and-counting relationship with three Ronald McDonald Houses.

Klinefelter’s Syndrome is a rare condition that affects fewer than 200,000 males annually. It is when a male is born with an extra X chromosome that disrupts a boy’s growth making him typically smaller in his youth. Although Klinefelter’s Syndrome cannot be fully cured, there are treatments that can help Levi’s development as he gets older.
Klinefelter’s Syndrome has always been the least of the Carsons’ worries, however. It is the failure of Levi’s one kidney that is causing him all the trouble. As Levi’s mom, Sarah, says with a laugh, “He’s smaller and will eventually be a lengthier man with a baby beer gut. He’s good.”

Sarah and her family are beyond thankful for the Ronald McDonald House. Because of this place her kids have a sense of normality throughout Levi’s treatments. She explains how they have to do everyday household things like clean up their room, eat breakfast and play in the yard. Most importantly, her kids get to be together during Levi’s treatment. She says with a smile how she would have never guessed she’d be the mom trying to keep brother and sister together, but she is. Nor, did she ever realize how important that would be toward Levi’s health.

“Siblings are the best medicine. Lydia does not treat him different. He has always just been Levi, her big brother. He is not Levi with this tube or that tube. No, he is the big brother sitting in her spot or playing with a game she wants to play with. It makes him recover quicker,” says Sarah.

Currently, Levi is receiving treatments from Cook Children’s five times a week. He recently underwent a surgery to expand his bladder that was only holding one ounce of liquid, instead of the common five to six ounces of liquid. They are hoping once he recovers, there will be a match for the kidney transplant he needs.  Sarah says, “When you have a kid that gets a diagnosis, whether it’s chronic or a one-time thing, you are an immediate member of this club that you never asked to join. Once you come to the Ronald McDonald House you’re surrounded by people who are also members of this club. They didn’t want it either, but they get you. And by knowing that all of these people surround you and get you, you’re more stable, loved and supported than you ever could be on your own than you ever could be on your own. You become so grateful for this place. It becomes part of your story.”