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One Little Indian Boy

On New Year’s Day, 2018, our extended family had gathered to celebrate a late Christmas. My mother-in-law asked our son Ben, who was five at the time, if he had gotten everything he wanted for Christmas. He said that he did for the most part, but he really wanted a little brother or sister. This sparked a boisterous conversation among our three boys. Our oldest, Will, age 13, tried to explain that, due to some medical issues, I was no longer able to have kids. Chris, 7, suggested that we could adopt, but if we did, it should be a boy, because “girls are too much drama.” After this went on for several minutes, I interrupted them and said that if this was what they really wanted, they should talk to God, because I wanted no part in it.

The truth is that my husband and I had experienced a failed adoption a few years before Ben was born, and I knew I couldn’t go through another heartache like that. To me, our boys were just having an amusing holiday conversation. Apparently, God was listening in.

Two weeks later, there was a phone call. The child safety officer in charge of foster care and adoption was calling.

Now for a little explanation. My husband Thomas is a full-blooded Native American. He is half Eastern Cherokee, a quarter Comanche, and some Sac and Fox, and Pawnee. He was raised around his father’s tribes (Comanche, Sac and Fox, and Pawnee), so he was more connected to that side of his family. Thomas’ mother left the Eastern Cherokee Reservation in North Carolina at age 16 to attend a boarding school in Oklahoma. Though there is often a stigma associated with boarding schools for Native Americans, in this case, it provided a safe and stable environment for my mother-in-law. This set up a new family structure so that my husband was able to be raised in a home with both a father and a mother. Mama Harris’ siblings back on the reservation were not as fortunate. Children growing up were often placed in foster care or group homes.

The person calling informed us that Thomas’ tribe had a little boy who needed a home. They had researched this boy’s family tree and discovered that my husband was his second cousin. During this initial phone conversation, we were told that if we wanted more information, we would need to do a background check that typically took four to six weeks. Thomas happened to have the next day off, so we made a trip to our local courthouse for that background check. To our surprise, it took four to six minutes and not weeks! With the background checks submitted, we waited for more information. We soon learned that this little boy was 18 months old and had some medical issues which had contributed to the difficulty in finding him a home. In fact, during his young life, he had already been with nine foster families.

Fast forward a couple of weeks from the initial phone call, and we were meeting with a social worker in our living room. She looked over our house (what is called a “home visit”) and asked a lot of questions to determine if our family would be a good fit. In the interview, we were shown pictures of this little boy and were given a quick medical history. A date for our family to travel 945 miles to go meet this little boy was scheduled.

Arriving at the reservation, we were taken into a small conference room where the social worker brought in the cutest, chubby little boy. We learned that his name was Haidyn. We spent a couple days with Haidyn that week, all the while thinking that the next steps in the process of bringing Haidyn into our home would take a few months. The reservation has its own courts and legal system, so we really didn’t know what to expect. The day before we were to leave, we went to Haidyn’s daycare to say goodbye and were asked what time we were leaving the following morning. That was when we learned that a judge had already signed the order and we could take Haidyn home with us. So, on Friday morning, March 16, we left the reservation—a family of six!

From the stack of medical records six inches thick, we knew Haidyn had seizures. Reading through the records was heartbreaking! Every time he had a seizure, he was flown by helicopter to the nearest hospital, an hour away. The reservation had a clinic, but not a hospital. Even so, the hospital only had neurologists who treated adult patients. These doctors were doing the best they could, but they were not trained for a case as complicated as Haidyn’s, nor did they always have the right size equipment for him. On one flight, his femur was almost broken when the attendant, needing to get Haidyn medicine quickly, tried to do a procedure without a small enough IV. Haidyn was on four seizure medicines at doses far greater than the recommended dose for his age, and yet the seizures would not stop. Finally, the neurologist at the hospital said they could no longer treat him.

When we arrived back home, I called our local children’s hospital, Cook Children’s in Fort Worth, and asked for the very first neurology appointment they had. People often wait six months for these appointments, so I emphasized that I was willing to drive to any of their locations. We were given an appointment a few months out with a nurse practitioner. Looking at Haidyn’s chart, the nurse practitioner knew immediately that she needed someone else to help. She left the room, found a neurologist in the hall who happened to be between seeing patients, and brought him into our room. This neurologist was not just a regular neurologist, but a genetic neurologist. Flipping through the stack of medical records, he stopped on the third page. Pulling it out, he stated with confidence, “I know exactly what he has.”

There it was-a diagnosis! He continued, “He has a gene deletion on his SCN1A gene” and continued to rattle off exactly where that deletion was on the sequence of this very specific gene.

This disorder is called Dravet Syndrome. It is a rare form of intractable epilepsy that begins in infancy and tends to get worse as the child grows. It occurs in about 1:15,700 people worldwide. Dravet Syndrome also causes severe developmental delays, orthopedic issues, and disruptions of the autonomic nervous system which can lead to difficulty regulating body temperature, heart rate, and blood pressure. Ultimately, these children have a 15%-20% higher childhood mortality rate.

This news wasn’t good, but we knew there had to be a reason for God to orchestrate this little boy from North Carolina coming halfway across the country to become part of our family in Texas. But what this doctor said next was the best part of that visit—the part that helped us see the reason God had brought Haidyn to us. He told us that the head of neurology, Dr. Scott Perry, at this particular children’s hospital, was one of the world’s leading experts on this rare disorder. “In fact,” he said with obvious pride, “it is his favorite disorder, and he has devoted his life to studying and treating it.” We were told that it would be a really long wait to get in to see this specialist—but it was worth the wait! God was already working on it, and we were able to be seen within a few months.

Haidyn was just under two years old when we brought him home. He is now seven. He still has seizures, but they typically last only a minute as opposed to hours, and he has not had to be hospitalized in the five years we have had him. He does still have developmental delays, but he is learning things that we never imagined he would be able to learn. He is going to school and making friends. He goes to church and loves to sing about God. He points to our church logo and says, “It’s God!” Although it is not entirely correct, it makes me so happy to know that he can see God in those who love and care for him as the family of God. He has been able to participate in three clinical trials that have not only helped him have access to better treatment but will help other kids with Dravet Syndrome have better treatment options as well. We have been able to share Haidyn’s story with doctors, the children’s hospital, and even a paramedical company. Though they are interested in his change medically, it opens the door for us to talk about the God who knew Haidyn on the reservation, has a plan for his life, and loves him enough to make all of this happen.

We do not know what life for Haidyn will look like in the future. Our goal is for him to live a happy life doing as much as he can. We know that no matter what happens, the Lord establishes our steps, and His plans are so much better than anything we can imagine on our own.

“The heart of man plans his way, but the Lord establishes his steps” (Proverbs 16:9, ESV).

Andrea Harris serves as the Director of Preschool Discipleship at First Baptist Church Hurst in Texas. She considers her most important job is mothering her four boys, especially during times when her husband, Thomas, is on extended overseas duty with the United States Air Force. In all her work, Andrea finds strength and joy in the Lord as she tries to live out Proverbs 31:26 (ESV), “She opens her mouth with wisdom, and the teaching of kindness is on her tongue.”

Article Link: http://ccmusa.org/read/read.aspx?id=chg20240101
To reuse online, please credit Challenger, Jan-Mar 2024. CCMUSA.