[title subtitle=”words: Marla Cantrell
images: courtesy Natalie prescott”][/title]
Natalie has found solace in her family’s struggle, something incredible to consider. “This isn’t the life I had planned for myself or for my kids, and it wouldn’t be the life I would have chosen for Beckham. But you can either let it get the best of you, or you can make the best of it. And that’s what we do.
Something was wrong. That was the thought that troubled Natalie Prescott in 2012, in the days and weeks and months that followed the birth of her second son, Beckham. There had been problems during his delivery, and he’d stayed in the neonatal intensive care unit for more than a week. At two months of age, he was diagnosed with clubfoot, a condition that causes the foot to turn at an awkward angle.
Beckham was fitted with casts and wore them for six weeks. Natalie remembers standing by his bed at their home in Fort Smith, Arkansas. Beckham seemed to sleep a lot more than her older son, Hudson, had at the same age. It also seemed as if Beckham wasn’t interacting as much as she thought he should.
Babies develop at their own pace, and Beckham had the disadvantage of spending more than a month in casts that covered his feet and legs. That might have explained what Natalie was seeing, and she says that was the consensus, but she couldn’t get rid of the feeling that there was more going on.
At nine months, he was not yet sitting up on his own. He was crawling, but Army-style, pulling himself with his right arm and tucking his left arm underneath his small chest. Concern enveloped Natalie and Beckham’s dad, Jason, at that point. Still, there was no definitive diagnosis. For a while, it seemed as if Beckham might have cerebral palsy since he exhibited many of the signs. He started going to physical therapy at eleven months, and Natalie says his results were puzzling. Some days, he seemed to be making progress, and then he’d digress, which was not typical of cerebral palsy. “He might take several steps at one session, and then the next time, he’d only be able to take one or two,” Natalie says.
This sent her looking for answers. “I’d stay up until three in the morning almost every night, researching, trying to figure out what was going on.”
During those sleepless nights, Natalie had come across websites about a rare genetic disorder called Pelizaeus-Merzbacher Disease (PMD), and she wondered if Beckham might have it. PMD belongs to a group of genetic disorders called leukodystrophies and leads to aberration and damage in the white matter of the brain and spinal cord. It shows up in only one in 500,000, and right now there’s not a cure. In most cases, symptoms begin in the first year of life with diminished muscle tone, poor coordination, involuntary eye movements, and delayed motor development.
At Arkansas Children’s Hospital in July 2015, test results confirmed her suspicion. “For a long time we were afraid we’d never get a diagnosis, so it was kind of a relief, but it was heartbreaking.
“They told us this happens at conception and that there’s absolutely nothing we could have done to cause this. I had been worrying, wondering if I’d taken something I shouldn’t have when I was pregnant. I was thinking, Did I take something for my sinuses? Could that be it? When they named the disease, that mother’s guilt went away, but my heart was broken.
Natalie says she underwent testing to see if she was a carrier of PMD. The tests came back negative. Her understanding is that the disease just spontaneously started with Beckham, in their family line. After she says this, she pauses for a few seconds. And then she says, “For whatever reason.” Those three words, for whatever reason, seem to take something out of her, although she recovers quickly. “He’s a little fighter, and people say I’m stubborn, but he’s really stubborn!” she says. “He works so hard to try to do the things his brother and older sister do.”
She is telling her story from the Ronald McDonald House in Durham, North Carolina. Her parents, along with Jason, and Beckham’s sister Avery have come for a visit, and Natalie is happy to have them nearby. Nearly one hundred days before, Beckham underwent stem cell therapy at Duke Children’s Hospital after eight days of chemo. In the wake of the treatment, he had to have blood transfusions, which is not uncommon, but frightening none the less.
Beckham is doing incredibly well, Natalie says, and he is being monitored closely. If all goes as planned, Natalie adds, the stem cells could stabilize the disease and prevent further damage.
Back at home those who love Beckham, along with those who’ve only heard his story, have been donating money and attending fundraisers, something that is essential due to the costs the family has incurred and will continue to incur.
On this day, nearly 17,000 people are watching Beckham’s progress on his Facebook page, Join Team Beckham. Recently, Natalie posted a video of him walking down the hall of the hospital. His immune system is still weak, so he’s wearing a mask over his mouth and nose. His gait is a bit unstable, but he’s moving fast, holding his small hands together. He looks like he’s on a mission.
“Beckham wants to play football one day,” Natalie says, “and I know he will,” Natalie says. That dream has gotten even bigger since he’s been In North Carolina. Two Duke University football players, Corbin McCarthy and Ben Humphries, have taken Beckham and Hudson under their wings. The boys can attend games and go out on the field with the team before play begins.
Natalie talks about what a blessing the two young men have been. And then she says, “I want Beckham to have a long and happy life, and I believe he will. From the beginning, we’ve let him do what he can for himself, and we’ve let him try to do things he can’t. When he needs my help, I’m right there for him, but I’ve never treated him like he has a disability. I stay positive about ninety-nine percent of the time. There’s nothing I won’t do for him. If there’s somewhere I can take him that will help, I’ll take him.”
That determination took her to Florida last fall where he underwent an intensive three-week round of physical therapy. He even wore a device whose concept came from the suits astronauts wore when they came back from outer space and needed to learn to walk on Earth again. It helped so much, she hopes to take him back yearly.
She’s been to Utah, where she met with a neurologist studying white matter diseases. “He told me that right now they didn’t have anything available to help PMD kids, but that two years from now we could be having a very different conversation.”
That hope is one of the things that keep her going. On his Facebook page, pictures show him with his mom and dad. With his sister and brother. With his grandparents. His eyes are dark pools of joy. His smile shines like the sun. He is a bright and quick and curious little boy.
That smile is one of Natalie’s favorite things about him. And then there’s his tenacity. “One day, I watched him put his shorts on, and it took him maybe fifteen minutes, and when he finished, they were on backwards, but I didn’t care. I let him wear them like that all day. He was not going to stop until he got them on. He was huffing and puffing and holding his balance against a chair with one hand and tugging on the shorts with the other. Tears were rolling down my face. I realized how much I used to take for granted.
“There are days,” she says, “when I’m not happy-go-lucky. Sometimes reality just slaps me in the face. It gets hard sometimes to watch your kid not be able to do things that should be easy. Hudson just turned six. God knew what He was doing making him Beckham’s older brother. Hudson is amazing with him. And it doesn’t bother him that he missed out on T-ball this year. He missed out on a lot of things. They both have. But he doesn’t complain. I’ve asked Hudson if he wants to go home so he can see his friends and play ball and he says, ‘No, I’m not leaving my bubba.'”
Natalie pauses again, overcome by the bond between her young sons.
“I’m so grateful to our family and friends and to the community for all they’re doing for Beckham. We’ve been watching videos of the fundraising that has been going on. (In July, there was a fundraiser at Crawpappy’s in Alma called Battle for Beckham.) It just melts my heart to know how people are coming together. I can’t put it into words how I feel. There are some families here who don’t have that support system, and it’s tough. Our pastor from Butterfield Assembly of God in Van Buren even flew here on the day Beckham was admitted. We feel so very blessed.”
Natalie has found solace in her family’s struggle, something incredible to consider. “This isn’t the life I had planned for myself or for my kids, and it wouldn’t be the life I would have chosen for Beckham. But you can either let it get the best of you, or you can make the best of it. And that’s what we do. We’ve met amazing people. In four years, Beckham has taught me more than I’ve ever learned in my entire life. He changed my perspective, and he’s taught me how to live. He works hard, and he doesn’t give up. When you go through something like this, you look back at things you thought were a big deal before and things you might have fought about, and you realize those things are minor, and not worth it.
“I still make mistakes daily. I’m by far not a perfect person, but I’m a better person than I used to be, and I’m a better mom because of what I’ve learned. I thank God every day for blessing me with my kids and my family and having a strong group of friends and church family. Sometimes, if I’m wondering if God’s forgotten me, He’ll do something to show me he hasn’t.
“I know people are praying for Beckham, and we’re so thankful for that, and we believe prayer works. But if they could pray for all the other kiddos here, I would appreciate that. Before this happened with Beckham, I knew there were kids who were sick and families who were hurting. But you don’t always realize until you’re here, and you actually see it, what it’s like. Just pray for those who’ve lost kids, and for the kids who are still fighting for their lives.”
Then Natalie says, “Beckham has already touched more lives than you and I ever will.
The statement is true and pure. She thinks a lot about what life will be like as he grows older. When she sees his future, she sees him run onto the football field, the happiest kid on the team. She has no doubt that it will happen. And when it does, she’ll be cheering louder than anyone else, this mom who would do anything in the world for her precious little boy.
