Jakob Perez has been on the waiting list for a five-organ transplant his whole life.

Because of a rare and severe intestinal disorder, Jakob needs a new stomach, small intestine, liver, pancreas and colon.

As a baby, the now five-year-old was diagnosed with microvillus inclusion disorder, which causes severe diarrhea and prevents the intestines from absorbing nutrients. He was also born with chronic intestinal malformation, an anomaly in his gastrointestinal tract that requires highly specialized care.

Jakob can't eat regular meals like other preschoolers. Instead, he receives his nutrition through a tunneled IV line. The IV line requires meticulous care and dressing changes sometimes several times a week. Patients with IV lines are also at risk of developing a life-threatening bloodstream infection.

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Needless to say, caring for Jakob's medical needs is a 24/7 commitment.

That's why Jakob's family recently traveled to the nation's capital during the Speak Now for Kids Advocacy event to share his story with legislators and advocate for government programs that are critical to children like him.

The road to Washington

Jakob receives care at C.S. Mott Children's Hospital's Children's Intestinal Rehabilitation Program (ChIRP) at Michigan Medicine, the only multidisciplinary team of its kind in the state that solely treats patients with intestinal malabsorption and short gut.

"My hope is that after hearing Jakob's story, our members of Congress will remember Jakob and the Perez family and advocate and vote yes for programs that continue to fund children's healthcare," says Sarah Shell, a Mott clinical social worker in the ChIRP program.

Shell nominated the Perez family for the Speak Now for Kids Advocacy event in Washington D.C., which gives families like Jakob's an opportunity to meet with lawmakers and advocate for children's health care needs. The event, organized by the Children's Hospital Association, aims to put a face and story behind the laws and policies members of Congress are making decisions on in Washington.  

Jakob currently has Medicaid as a secondary healthcare coverage as well as Children's Special Health Care Services, another Michigan based insurance program for children with chronic medical needs. He has benefitted from his Medicaid coverage, as it covers private duty nursing, which his private insurance excludes.

"I have come to know the Perez family and Jakob well," Shell says. "I nominated Jakob and his family for this opportunity because I feel they have a compelling story to tell and excel at being advocates for Jakob's ongoing medical needs."

When Jakob was nominated to go to Washington D.C. for the event his parents, Joshua and Mickaela, were thrilled.

"We were honored to attend the event in Washington to advocate for Jake and children like him," says Joshua. "So many people don't want to talk about these serious topics because it makes them uncomfortable or uneasy, and we were there to make sure those messages were heard."

Little Victor on Capitol Hill

The Perez family made the trip to Washington a vacation to remember, visiting the White House, Washington Monument, Lincoln Memorial, Arlington National Cemetery and other historical destinations.

The family, who lives in Chesaning, Michigan, had always wanted to visit Washington, but because of Jakob's condition, hadn't considered making the trip until the nomination.

"Travelling with Jake is a logistical nightmare," Joshua says. "It takes extra time to get through security because of his medical equipment and we have to carry on all of his medications because we're afraid they'll get lost, which then we'd have an emergency situation on our hands."  

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During the event in June, more than 50 children, their families and representatives from children's hospitals across the nation went to Capitol Hill to ask their state's lawmakers to make children's health a national priority.

"It is especially important for us to advocate for organ donation because of Jakob's situation," Joshua says. "Parents don't want to ever think about something critical happening to their child, but someone's child could save our son's life." 

While at the event, the Perez family was able to meet with U.S. Congress members who make decisions to help children like Jakob, including Representatives John Moolenaar, Debbie Dingell and Dan Kildee.

"The congressmen and women listened to our son's story and were actually interested in what we had to say and asked questions," Joshua says. "That is all we could have asked for – recognition and validation that our son and kids with severe medical needs were thought of."

Jakob met many people on the journey to Washington and had the chance to share his story. His favorite part of the trip? It wasn't seeing the White House or visiting the Lincoln Memorial – it was riding on the airplane.

"One day Jakob will look back at this trip and see all of the impact it had, but for now, he's a little boy who loves an airplane ride," says Joshua. "How special is that?"