Taste and See God’s Goodness: The Jackson Willms Story

As I glanced out the front window and watched Jackson Willms and his care aide make their way up the front steps, I realized this seemingly ordinary scene was profoundly miraculous. Jackson bounded into his home full of energy and enthusiasm. He ran to his mama, calling her name excitedly, and gave her a flower as he wrapped his arms around her legs. Then, he moved to his dad for a hug and proceeded to play with the dog. In a matter of seconds, the quiet of the kitchen was overtaken by energy and excitement, and I marveled at the goodness of God.

When Dave and Brittany Willms married in 2012, they had no idea of the trials they would endure with the birth of their first child. Like most newlyweds, they dreamed of owning their own home and having children. After two years of marriage, the couple was able to buy their first house. Two and a half years after purchasing their home, they were expecting their first child.

The anticipation of a new child brings many hopes, dreams, and desires. The pregnancy was relatively normal, and as it progressed, there was a lot of excitement for the baby’s arrival. However, Jackson Willms was born six weeks premature on January 3, 2017—one day after his dad’s birthday!

After his arrival, Jackson spent time in the Neonatal Intensive Care Unit (NICU), where he received round-the-clock care to monitor his growth and a few other health issues. Jackson was not able to feed normally, so he required a feeding tube to help his underweight body receive the nourishment he desperately needed.

After almost six weeks in the NICU, Jackson was discharged to go home. Once home, the young family started to bond as they established routines. Dave and Brittany had a steep learning curve as they embraced all aspects of new parenthood and Jackson’s medical care.

They were responsible for feeding Jackson through a nasogastric (NG) tube—a thin, soft tube that goes through the nose, down the throat, and into the stomach to feed formula to babies who cannot get nutrition by mouth. Daily life for the family included diaper changes, NG tube changes, and ensuring that baby Jackson was kept safe and secure during the entire process.

Grace in the Trials

Jackson was home for three weeks when he became critically ill in a matter of hours and had to be rushed to the emergency room because of something that looked like the start of an eye infection. When the family arrived at the hospital, Jackson was immediately rushed to a large room where a team of medical staff worked on him. Once the team stabilized him, they admitted him to the ICU.

After four days in the ICU and numerous rounds of testing, Jackson (then two months old) was diagnosed with Severe Combined Immunodeficiency (SCID¹), also known as “bubble boy disease.” Basically, he was born with no immune system. Even something as simple as the common cold could be life-threatening.

With the SCID diagnosis, Dave and Brittany found out they would be living at the hospital for the next five months in an isolation room while Jackson awaited treatment for SCID and recovered from pneumonia, sepsis, and meningitis.

During the months the family was in the hospital, they had to follow strict protocols to prevent Jackson from getting sick. The parents were unable to give Jackson kisses or have skin-to-skin contact with him because of the threat of infection. They couldn’t touch him without sanitizing their hands and wearing clean clothes that hadn’t been worn outside Jackson’s hospital room. Jackson was unable to have soft, furry toys. Visitors were not allowed except for Pastor Stan Block—the community pastor at RMCC at the time—and two additional caregivers who were both Jackson’s grandmothers.

The SCID diagnosis was difficult to process. Dave and Brittany also had to navigate loopholes and bureaucracy to receive funding for medications and procedures Jackson needed. Brittany applied and received an extension to her maternity leave under the provision of Parents of Critically Ill Children (PCIC) benefits, which extended her leave from work from one year to two years. Dave was also able to take 10 months off work to enable him to support his family.

Mercy in the Waiting

After his diagnosis, Jackson was immediately put on the registry for a bone marrow transplant—his only option for a chance at life. He also required an enzyme replacement shot twice per week and immunoglobulin therapy as needed. This therapy helped build a small immunity for him while they waited for a donor.

The Willms’ family home required extensive preparations before Jackson could go home. Dave and Brittany had to purchase a hospital-grade HEPA filter to purify the air. They had to give their dog and fish tank away. The house had to be cleaned and disinfected from top to bottom.

When Jackson was finally able to go home, managing his medications, central line, tube feeds, endless appointments, etc., was a full-time nursing job. The family had to maintain the hospital’s protocol since Jackson was still in a critical state. Windows stayed shut, and Jackson was not allowed outside except to go back and forth to the car, and once in the car they had to place a blanket or plastic cover over his car seat. They had to deep clean their home weekly, disinfect every item that came into the home, and wash toys constantly.

Since they had to be careful not to expose Jackson to others, Dave and Brittany rarely went out in public. They grocery-shopped during slow times and watched church online. The family truly lived in isolation.

When Dave and Brittany learned about a promising trial for gene therapy in Los Angeles, the family packed up and left for Los Angeles to participate in the trials from January to March 2018. Unfortunately, Jackson was one of two children out of 50 for whom the treatment didn’t work. Disappointed, the family returned to Calgary, and Jackson was placed back on the registry for a bone marrow match.

Comfort in the Storm

There were moments when Dave and Brittany were tempted to lose heart. During one of those moments, pastors from RMCC anointed Jackson with oil and prayed over him. The church family also prayed continually for Jackson. The couple’s trust in God allowed them to endure and remain committed to seeking the best possible medical care for Jackson—standing by his side and staying faithful to their marriage. They believed giving up on their marriage would be like giving up on Jackson, and that was not an option. They also believed that God makes no mistakes in perfectly accomplishing His will.

As the Willms family waited, the Lord blessed them with three promising donor matches, which allowed the doctors to be extremely particular about which donor they selected. In January 2019, Jackson underwent chemotherapy and a bone marrow transplant.

From the time of Jackson’s diagnosis until January 2020, the family lived in extreme isolation, but nine months post transplant, some restrictions they had been living with were slowly lifted. By January 24, 2020—one year after his transplant—Jackson’s immune system was considered strong enough to lift all restrictions. The family looked forward to introducing Jackson to a wider group of family and friends and taking him on excursions outside of the house.

Unfortunately, they only enjoyed six weeks restriction-free before COVID-19 was declared a health emergency. Once again in isolation for several months, the family navigated how to keep Jackson healthy and safe while giving him the exposure needed to strengthen his immune system.

Though the family was in survival mode for those difficult and dark four years, the Lord was their security, comfort, strength, and sustainer. With their feet firmly planted on the word of God, Dave and Brittany remained at Jackson’s side as he fought for his life. They looked past the inconveniences of their less-than-ideal situation and looked to the Father of mercies and God of all comfort, who comforts us in all our afflictions (2 Corinthians 1:3-4).

Both Dave and Brittany learned to accept the life they were living and surrender their big fears to God. They faced and worked through their anger and disappointments and trusted God with their future.

Goodness Through it All

Three and a half years after Jackson’s birth, Brittany finally felt like she was no longer a nurse to Jackson. For so long, the goal was to get Jackson healthy. There had been no time for any of the normal mothering experiences. Now, she could fully embrace her role as a mother to Jackson, and Dave could fully embrace his role as a father.

Today, Jackson is a happy, energetic boy in Grade 1 at a local public school where he is supported by a personal classroom aide. He continues to be tube-fed and is officially diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD) and Global Developmental Delay (GDD). He’s working on his fine motor and problem-solving skills using applications on his iPad. He enjoys imaginative play and loves his cat, Bella, and dog, Koda. Socialization and making friends continue to be a challenge for Jackson because he sometimes exhibits explosive or aggressive behavior. Jackson can attend Kids Church at RMCC because of a special ministry called Buddy Ministry.

Looking back, the couple declares that God was good in those three years of isolation. For example, Jackson did not even get a cold! The support they received from their family and friends, the church, and an army of people praying for Jackson overwhelmed the couple. God provided for them in every aspect, every step of the way. Giving all the praise and glory to God, Dave and Brittany testify that it was truly a miracle that Jackson stayed as healthy as he did through all of it. His completely recovered immune system is another miracle!

As I sat across the table from this young couple, listening to their story, Psalm 139:13–18 came to mind. God created Jackson, who is fearfully and wonderfully made, and God’s thoughts of Jackson are precious.

The Willms family truly has tasted and seen that the Lord is good. Let’s join them in praising and magnifying His name.

I sought the Lord, and He heard me, and delivered me from all my fears. They looked to Him and were radiant, and their faces were not ashamed. This poor man cried out, and the Lord heard him, and saved him out of all his troubles. The angel of the Lord encamps all around those who fear Him, and delivers them. Oh, taste and see that the Lord is good; blessed is the man who trusts in Him! (Psalm 34:4–8 NKJV)

¹There are many types of SCID and ADA deficiency is one of them. At the time of Jackson’s birth, SCID was not part of the newborn screening panel in Alberta. Jackson was the first known case of ADA deficiency in Alberta and the first baby in the province to be officially diagnosed with ADA-SCID. At the time of Jackson’s birth, approximately two Alberta babies per year were diagnosed with SCID. Jackson’s diagnosis paved the way for early detection through newborn screening for other babies born in Alberta. Since the new screening process was implemented, six patients have been diagnosed with ADA-SCID, giving them easy and quick access to the medication they desperately need. Dave and Brittany thank God for this new provision of early detection for babies born in Alberta.