Samaritan members keeping promise to their child—with a playground

Patrick and Destiny Hoerter, Samaritan members from Wausau, Wisconsin, are raising money for JoJo’s Jungle, a playground in honor of their late child, Josiah, or “JoJo.” Following is the Hoerters’ account of their brief time with JoJo on this earth as well as an explanation of why they’re building the playground. If you’d like to help the family meet their financial goals and make JoJo’s Jungle a reality, please visit www.jojosjungle.org or Facebook.com/JoJosJungleWausau. They welcome your prayers and encouragement.

Our son Josiah was born in 2012 as our nephew.

When we learned he needed a home, we immediately said yes. When we brought him home at 11 months old, we noticed he wasn’t developmentally on track. The concern that something was wrong only grew larger over time. Doctors repeatedly assured us he would catch up; all would be fine. We prayed they were right, that God would help him as we worked daily on his therapy to improve his development.

As time went on, however, his neurologist ordered a genetic test to try to shed some light on some unanswered questions. A few anxious weeks went by and we received a call from the doctor with a diagnosis. Josiah had an incredibly rare genetic disorder called MECP2 Duplication syndrome. As we read the prognosis by the neurologist, we went numb. Our little JoJo, as we called him, would never walk, talk, or gain any kind of independence in his life.

MECP2 Duplication syndrome is a horrific disorder that severely interferes with the brain’s ability to coordinate anything in the person’s body. His prognosis also came with a sobering inevitability: We would likely bury our son while his siblings were still young. His shortened life expectancy was something we were not prepared for. More than half of MeCP2 DS children do not make it to the age of 13. His golden years were expected to be around the ages of 4-6; after that, the severity of the syndrome would increase sharply. The children suffer from untreatable seizures, frequent pneumonia, and rapid regression of any developmental progress they managed to make with years of intense therapy.

On Christmas morning 2014, shortly after the traditional present opening, Patrick noticed JoJo was unusually cold. We opened his sleeper and found he was bleeding from his abdomen. The whole family drove 50 miles to the nearest children’s hospital that morning, making it there in record time. More testing and procedures revealed he was losing more fluid than we were able to put into him and his body was not getting nutrition naturally through the digestive track. He was put on IV nutrition, which extends the lives of many people incapable of receiving proper nutrition through digestion. Only a couple weeks later, we had to accept that his body had also rejected the IV nutrition and his liver was failing. He was too weak to go through any more desperate surgeries.

We gave him to Jesus the morning of on February 7, 2015, three months shy of his third birthday.

Our son Isaiah was nearly his twin, both in looks and age. He struggled the most to understand and find meaning in it all, often wishing to build a stairway to Heaven so he could bring his brother, JoJo, back home.

The week JoJo died, realizing his Make-A-Wish would never be fulfilled, we made a promise to him.

Our hometown of Wausau never had a playground that JoJo and his siblings could enjoy together. JoJo’s limited mobility, sensory issues, and incessant stuffing of loose objects made our 20-year-old playgrounds too stressful for us to visit. We promised to build an all-inclusive playground in memory of him.

Two years have passed and we have not let that promise rest. Together with his therapists and friends, we designed a playground unlike any other we know of. It will be called JoJo's Jungle, after Josiah, our little monkey of a child. Once built, it will be donated to the city of Wausau as a public, free, community playground. Families from all walks of life will be able to relax and enjoy JoJo’s Jungle together. Romans 15:1-2 says, “We who are strong ought to bear with the failing of the weak and not to please ourselves. Each of us should please our neighbors for their good, to build them up.” We are only strong because of Christ’s love for us. The light of Christ shined through Josiah’s life and will be a permanent fixture at JoJo’s Jungle as you walk in and read his story. We pray this park will glorify God and bring encouragement to other families each day, especially those who have children with special needs.

We firmly believe God has opened the door for our promise to be fulfilled. We immediately had the city's support of the idea. And, in April 2016, we officially began our fundraising by announcing the first gift of $1 million dollars to the $2.4 million project. Our hope is to have the rest of the funds raised for a ground-breaking ceremony May 21, 2017, which would have been JoJo’s fifth birthday.

The response has been tremendously positive response. Although it has been difficult to find people who have the passion, skill, and time to help with things like applying for grants and raising funds, we are reminded to patiently trust in God and He will see us through.

Regardless of the pace, we will keep laboring to His Glory and for JoJo’s memory.