An interview with Jake and Rebekah Hall

Jake Hall graduated from PHC with a degree in Government in the Political Theory Track. His eyes were on public office. He desired to “lead the nation and shape the culture,” especially in defending the sanctity of human life. PHC is where he met his wife, Rebekah. She was in the Public Policy Track. There seemed to be a trajectory to their lives, but it was altered with the birth of their son.

Jake reminisced when they returned to visit campus. He remembers seeing portraits of graduates that are serving in the public sphere and he thought to himself, “I don’t even have a suit that fits. This is not my world. And yet,” he continues, “I would hope that anybody who heard our story would somehow be encouraged: ‘Whatever God gives you, that’s what you do.’”

God has a way of saying, “Here’s what I want you to be focused on. This is important. This is right in front of you. I want you to be faithful in this.” For Jake and Rebekah, their work was clear when their second child, Thad, entered the world. Suddenly they were parents of a medically fragile son. He would be six years old before even being diagnosed.

Today, Thad Hall is 13 years old and is diagnosed with Jamuar syndrome (JS), a rare genetic disorder previously undiagnosed anywhere in the world. JS affects the brain development and is caused by a mutation in a gene called UGDH. There are fewer than 40 known cases worldwide. Thad has frequent seizures, loss of muscle tone, he is unable to speak, and cannot walk on his own.

In a moment, Proverbs 16:9 became obvious: “The heart of man plans his way, but the Lord establishes his steps.” At the time of Thad’s birth, there was a reorientation of priorities. God was saying to the Halls, “I want you to be faithful in this.”

Not Just A Defeated Parent

“We’re just doing what many parents would do. It’s not a broadly-focused mission,” Rebekah explains. She knows other parents whose children have physical challenges that have “shaped much of their calling.” Rebekah found comfort from an older sister in the Lord. She wondered if there was more that she should be doing for her son. It’s as if the Lord has prepared the elder sister. With a wisdom that could only come from the Holy Spirit, her friend encouraged the young mother with this: “You don’t need to write a book or start a foundation.”

Rebekah would rest in that message for the next several years. There was another season coming. Thad had, in fact, shaped much of her calling. About 18 months ago, Rebekah realized that it was time to start a foundation. It was during a trip to visit the geneticist in Baltimore. As she drove, she sensed the Lord may have been speaking to her. “Don’t go just as another defeated parent. Go on behalf of parents around the world whose children have the same diagnosis, but they are hours from specialty care, or that don’t have any specialty care.”

During that appointment, it became clear that forming a 501(c)(3) was the best way to bring people and resources together to serve families and hasten the discovery of new treatments. Rebekah took a course on forming a foundation from the National Organization for Rare Disorders and attended Rare Disease Day at the National Institutes of Health. Jake and Rebekah developed a website and began conversations with doctors who had specific interest in the disease.

The vision was crystalizing. “It’s really an exciting time for rare disease research. There’s been a shift in the past 10-15 years where there are technologies that didn’t exist before—like machine learning, computing power, and the ability to collaborate and find other patient families like never before—that are really accelerating rare disease innovation.”

Rebekah shared a statistic that it takes 15 years and a billion dollars for a disease-specific treatment to be developed. Presently, more than 90% of rare diseases don’t have a treatment. What would any of us likely feel after hearing that information? The message was clear: this path, should you choose to walk it, will become your “mission.” By pouring your life into the well-being of Thad, whom you love—as well as people across the globe whom you’ve not even met—you could improve the treatment options available to them and several others in the future. But Rebekah is not a defeated parent. When Rebekah heard these stats, she boldly moved forward anyway.

Building Community for Others

“If I had tried to start a foundation those years ago, I would have been spinning my wheels.” Rebekah recalls, “I don’t think we really would have gone anywhere. In fact, at that time, we didn’t even know what disease our son had.”

What is now named the UGDH Foundation incorporated last November. Their mission is to “bring relief to families affected by Jamuar syndrome through scientific collaboration for better treatments and a cure.” They formed a board of directors in March of this year, they’ve contracted with a firm to file for 501(c)(3) status, and they are in the early stages of creating a fully-formed medical/scientific advisory board. Through the UGDH Foundation, the Halls are serving their son but also many other rare disease patients and their families who were living with far less care and fewer treatment options.

Asking the Right Question

Our discussion then shifted to Jake’s journey. He recalled with me a particular John Piper sermon that had left quite an impression on him in the early years after Thad was born.

The encouragement that I got from the John Piper sermon was that we come to God lamenting with the pain, “Why is this happening?” Jake says, “We are looking for the cause. We want the reason for it. It’s not ‘cause,’ it’s ‘purpose.’ And that doesn’t make the pain less and it definitely doesn’t answer the questions that we ask, but it shifts the emphasis away from making God accountable to me and giving me answers, to making myself accountable to God to fulfill the purpose that he’s given to me and my son.”

Thad lives in a body that doesn’t function properly. He now breathes through a tracheostomy tube which needs to be regularly suctioned to keep secretions from blocking his airway. His trach would need to be reinserted right away if it ever was pulled out somehow. He is connected to a ventilator at night and he has frequent night-time seizures. He eats through a feeding tube. The Halls have orders for overnight nursing each night, but due to nursing shortages, they receive overnight nursing two to three times per week. Basically, he can’t be left alone.

Because Thad is stationary so much of the time, his favorite activity is movement. Since Thad was 5 years old, Jake would take him running in a modified jogging stroller; special bonding time that means so much to both of them.

Thad is limited in what he is able to communicate. Because he cannot speak, the way he communicates emotion is very subtle. Jake says that a great reward for running with Thad is consistently seeing him respond in ways that are subtle, but undeniably him experiencing something that he enjoys. “There is a foundational love that parents have for their child,” Jake explains, “that is never based on what the child can do or will do for us. It brings a parent joy to bring joy to their child. Seeing the witness that Thaddeus gives about life fills me with a lot of joy and helps me to appreciate every day as a gift. I think it helps other people to see that too. I just love running with him.”

The Halls’ ministry is to their family first, yet somehow they find the time to live “on mission” outside the home as well. Rebekah assisted a Bible study at a local jail from 2018-2019. She created Scripture memory songs and recorded an album to help with the children’s ministry at church. “Her heart has stayed the same. Her desire,” Jake explains, “is to say, ‘God, whatever you put into my hands, and whatever strength you give to my hands, I’m going to use this for your honor.’”

Living on mission is a commitment to the seemingly big things that come with public visibility. A commitment to serving others also requires our faithfulness in the mundane duties of day-to-day life. It may look like starting a foundation to create better treatment for parents who are raising medically-fragile children, but it also looks like housework, homeschooling children, and awakening their sense of wonder. It’s faithfulness in cleaning a breathing tube, staying with a child who is seizing, or monitoring a pulse oximeter at night.

Jake encourages others with this: “The work you are given to steward can look very different from what we had originally anticipated, but there’s great potential there.”

This article originally appeared in the Fall 2023 edition of Founders magazine.

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 Patrick Henry College exists to glorify God by challenging the status quo in higher education, lifting high both faith and reason within a rigorous academic environment; thereby preserving for posterity the ideals behind the "noble experiment in ordered liberty" that is the foundation of America.