Josiah’s 3,000-Mile Journey

Josiah (Photography by Fagan Studios)

It’s hard to be away from home. It’s even harder when home is far away.

Zuren and Josiah are from the small island of Trinidad. It is home to 1.27 million people and is 1,833 square miles—2.33 million people and 4,531 square miles less than the Twin Cities. But it is home.

“I am originally from the Dominican Republic, but my husband is from Trinidad,” said Zuren. “It is a beautiful country with kind people.”

And it is more than a hop, skip and a jump away from Rochester, Minn.

“My husband stayed in Trinidad with our two older daughters,” Zuren said. “It’s sad. But we need to be here for Josiah.”

Josiah was a happy, healthy baby. His mother described him as “normal as any other kid his age” and “never sick.” But all of that changed when he became ill with what the doctor in Trinidad classified as a severe cold and flu.

Josiah was given Vitamin C and an expectorant and prescribed antibiotics; the doctor said he would be better in one week. But soon the medication was gone and the illness was not. The doctor prescribed stronger medication, but he didn’t improve.

Shortly thereafter, Josiah developed mouth sores and swelling in his gums. The doctor classified it as a type of hepatitis infection. But treatments for his mouth did not work and it was worse every day. He started running fevers as well.

Josiah and Zuren (Photography by Fagan Studios)

Josiah was admitted to the private hospital in Trinidad for one week. He developed a stomach infection—perhaps caused by taking too many antibiotics. He was discharged, but his condition worsened at home.

“It was strange,” said Zuren. “We still didn’t know what was wrong, but we knew something was wrong…really wrong.”

Josiah and his family made the trek to the children’s hospital because it had a greater blood supply than the private hospital. He received blood tests, which revealed a high inflammation marker and other abnormalities. Additional tests did not reveal much information. Restless nights on the hospital floor in his quarantined room and long days trying to keep an active toddler on a hospital bed were trying times. And days turned into weeks.

The doctor told them it wasn’t looking good—he said he thought it was cancer.

The situation left Zuren and her husband with so many questions.

“What is wrong with Josiah?”

“Why does he have so many fevers?”

“Why aren’t they going away?”

There were no clues.

The fevers were controlled by ice water, cold cloths and medication, but would return stronger as soon as the medication wore off.

“I was so worried,” Zuren said. “He stopped eating and drinking—he was getting smaller every day. He cried until he fell asleep, but he couldn’t sleep well because he was in so much pain—we had to feed him PediaSure with a syringe to the back of his throat and use rags soaked with cold water to try and soothe the pain of the ulcers in his mouth.

“Nobody knew what was wrong.”

The children’s hospital said there was nothing else they could do, so Zuren and her husband traveled across the country to see more doctors. As energy, funds and hope were running low, one doctor said they needed to travel to the United States. He told them Josiah is neutropenic, but he didn’t have the tests, machines or medication he needed to treat it.

Neutropenia occurs when a person has too few neutrophils—the most abundant type of white blood cell—making those affected more susceptible to bacterial infections. It is very rare and can be life-threatening if it is not treated.

Josiah (Photography by Fagan Studios)

That’s how the family ended up at the Mayo Clinic in Rochester, Minn.

Their initial visit to Rochester lasted one month—their first experience with winter conditions—but they didn’t stay at the Ronald McDonald House of Rochester, Minnesota. Because they didn’t know it existed. Instead, the family rented a room in the building across the street from the House.

“I watched families come and go every day,” said Zuren. “I started dreaming—and praying—about staying at the House.”

Mayo Clinic prescribed a steroid and Josiah improved. He was a happy, healthy boy once again. Josiah and his family returned to Trinidad.

But soon the medication was gone and the illness was not..again. And he had the exact same symptoms.

Mayo Clinic told the family to return to Rochester for additional testing and treatment, but they had exhausted all of their resources. They didn’t have the money.

“I did not know how we would survive,” Zuren said. “We did not have any funds. But my husband said the Ronald McDonald House welcomes children and families who do not have money; they will help you.

“We called as soon as we were in Rochester.”

The family was on the waiting list for nearly two weeks before they received the call for a room. But it happened and it was more than they imagined.

“We walked outside every morning and saw the heart with LOVE & HOPE,” Zuren said. “The House gave us hope when we didn’t have any and gave us love when we were in need.

“It helped Josiah forget he was sick.”

The House recently cut the ribbon on its expansion—it is now a 70-room House with additional community spaces. And the House continues to welcome extended family members to stay and support their family in difficult times.

Josiah’s uncle (Glen), Josiah and Zuren (Photography by Fagan Studios)

“The expansion is so beautiful,” said Zuren. “There are so many families like us who need the House. Josiah’s dad cannot be here, so his uncle from New York is staying with us.

“It is stressful being in a new city and hospital; we couldn’t do it without him.”

And it’s not only the place, but the people. Volunteers make the House a home and provide families with comfort and care each and every day of the year.

“A smile may seem like something small, but to me a smile is like a fine diamond,” Zuren said. “They have beautiful hearts. And they care. It’s nice to know there are still people that care, even though they don’t know me or my family or my country very well. They care.

“This is a true friend family. Only a true friend will help you when you are in need.”

But Josiah’s journey is not over.

The additional tests revealed his body develops antibodies that fight his white blood cells; they die when they reach his blood. Doctors believe Josiah will need medication for the rest of his life. There is a slim chance he will not need medication as an adult, but only time will tell.

Zuren does not know if they will need to return to Rochester again—it’s unpredictable. They need to determine what Josiah needs to survive outside the hospital. But she is certain of one thing: Ronald McDonald House is their home.

“I can’t explain what happens inside the House,” said Zuren. “There is so much support, which is exactly what people need in these situations. There are so many parents who feel helpless and so many children who are in pain.

“I will never forget the Ronald McDonald House of Rochester—it will always have a special place in my heart. It is a place I will support for the rest of my life.”

Zuren and Josiah (Photography by Fagan Studios)
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