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Emily and Dylan Prigge with their son Leo. (Courtesy Photos/Emily Prigge)
By Emily Woodham
Staff Writer
Tests that screen newborns for illnesses are routine. Most families never have to worry about test results for their newest member. When Leo Prigge was born in Cottonwood on May 1, 2021, he seemed just as healthy as his older three siblings.
However, when he was 11 days old, his parents got a phone call from the pediatrician with bad news: Leo’s result was flagged for SCID (severe combined immunodeficiency).
“We had to go to St. Luke’s in Boise immediately,” said Emily Prigge, Leo’s mother. “We had to isolate from all people to keep away from germs and begin a lot of testing.”
After almost two weeks in the hospital, the doctors still could not pinpoint Leo’s exact disease. They knew only that he had something wrong with his immune system. Another team of doctors in Seattle was included to help diagnose Leo. The teams in Seattle and Boise decided to send Leo home with medication and instructions to isolate with his family until a diagnosis could be made.
For eight months Leo continued in isolation with his family and had weekly blood work.
“There was a lot of stress and anxiety for all of us during those eight months,” Emily said. “We knew the only thing to do was surrender completely to God and let Him guide us through our scary time. We prayed the Surrender Novena constantly and had the most amazing prayer warriors with us along our journey.”
In January of 2022, doctors finally discovered what was wrong. He had a gene mutation involving immune deficiency, the second known case in the United States. Leo needed a bone marrow transplant.
The Prigge family rented an Airbnb in Seattle and began the process of the bone marrow transplant at Seattle Children’s Hospital.
“Gianna, our eldest daughter, was Leo’s perfectly matched donor—a huge blessing. She was so brave and had a procedure to extract some of her bone marrow from her hips to give to her baby brother,” Emily said.
“Then came the hard part: My husband, Dylan, and I had to say goodbye to our big kids for 40 days so we could stay in isolation with Leo. It was an eerie feeling walking to our hospital room on the oncology floor. The rooms were full of beautiful children, some just three months old, fighting for their lives.”
The older Prigge children went back to Cottonwood to stay with extended family. Leo received five days of chemo to wipe out his small immune system. Transplant day was on Feb. 25.
“It was very anticlimactic. A small bag of Gianna’s bone marrow was infused into Leo in about 30 minutes. That was it!” Emily said.
That evening was Leo’s first time in the Pediatric Intensive Care Unit (PICU).
After only one night in the PICU, Leo was transferred to a regular room. While there, they waited for his sister’s cells to bond with Leo’s body, an outcome known as “engraftment.” At the same time, the effects of chemotherapy became more prominent.
“Each day we saw Leo getting weaker and weaker,” Emily said “Finally, he quit eating. Then his drool became out of control, and his throat started swelling.”
Leo had mucositis, inflammation of the mucous membranes. He had to go back to the PICU and was intubated for eight days.
“That was our low point. They were the most intense days of my life. Leo was on a ventilator and given a crazy amount of drugs, and we were told to wait. God worked in so many ways during this time. By His grace, we remained calm and confident,” Leo’s mom affirmed.
As engraftment began within Leo’s body, his swelling decreased, and he stabilized. Dylan and Emily were trained to care for Leo: how to give him a magnesium drip, care for his intravenous line and how to give him medication through his tubes.
“We felt like we went through an intense med school training in a 24-hour period.” Emily recalled, “We were discharged from the hospital and sent to the Ronald McDonald apartment a few blocks away. Our big kids joined us the next day.”
The Prigges stayed at the apartment until June. During that time, Leo needed to go to the emergency room only twice.
“We experienced so many beautiful moments during our stay in Seattle. We saw so much pain and suffering, but in the midst of everything, we saw God. He never left our side,” Emily said.
“One incredible moment was on Good Friday,” she added. “During the most solemn hour of the year, at 3 p.m., I was holding Leo, sleeping peacefully in my arms while he was having a blood transfusion. It was a powerful, beautiful, moving moment.”
Bishop Peter Christensen visited the Prigges soon after they returned to Cottonwood. He prayed over the family and anointed Leo. More than two years later, Leo continues to thrive.
“We had incredible support from family, friends and our community. We had numerous people praying novenas for Leo, and also had people pray over him before the transplant. God set a path up for us very beautifully. Leo has checkups and blood draws only every three months and yearly checkups in Seattle,” Emily said.
The Prigges are also grateful for modern medicine and their medical team. “We will never forget any of them.”
Along with the Surrender Novena, the Prigges developed a stronger devotion to the Sacred Heart of Jesus and Immaculate Heart of Mary during Leo’s healing journey.
Emily recalled, “We prayed to Blessed Carlos Acutis, St. Leo, St. Andrew, St. Gianna, as well as our dear friend, Dave Spencer, who died shortly after Leo was born. He was the husband of one of my best friends. He drowned. He knew who Leo was and prayed for him before his tragic death.”
Praying together as a couple and as a family sustained the Prigges through the trials. “My husband was my absolute rock through all of this. Having a calm, prayerful, trusting partner made the most difficult moments bearable,” Emily said.
“We will find out soon if our fifth child will have Leo’s same condition, so prayers are greatly appreciated,” said Emily. She added, “We encourage surrender to God in all aspects of your life. Give your cross to God, let Him guide you, and never waste any sacrifice given to you! So many graces come through your sacrifices!”
More than two years later, Leo continues to thrive.
Gianna (center, holding Leo), was the perfect match to donate bone marrow. Ava (left) and Milo (right) spent 40 days apart from their parents during Leo’s transplant.
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