Kristen Resendez made a career out of loving all things healthy and fit.
Her “Running Kristen” social media accounts were sensational – inspirational – motivational – and attainable for people of all shapes and sizes. At only 23 years old, she was changing people’s lives through her personal training and healthy lifestyle encouragement for more people than she could count.
Little did she know, on her 24th birthday, an even greater purpose would be given to her. The beginning of a whole new life – a life that would make an even bigger difference on the world than she ever imagined.
“I found out on my 24th birthday that I was expecting a baby. It was a bit of a surprise.”
Though she would be a single mom, Kristen knew without a doubt that she wanted to go forward with the pregnancy. She knew this baby must be something special. She knew she was chosen to be this baby’s mom for a reason.
“The pregnancy seemed normal as far as the doctors were concerned. I was young, I was healthy. The baby was young, the baby was healthy.”
A baby reveal party with friends and family unveiled that this sweet baby was a boy. A boy Kristen would name Jack Oliver Resendez.
However, Kristen never could have predicted how her happiness and anticipation would so quickly turn into worry and concern.
“When you see friends online, and other viral videos of babies shifting in tummies, I actually never had that. Ever. I could feel Jack moving internally, but it wasn’t ever anything dramatic.”
“I remember being at my 34-week appointment, and the doctor asked me how frequently I felt the baby move. When he asked me that, I kind of paused, and sat there. I said, “Well, I haven’t really felt anything in a couple days, actually.” I just didn’t know I was supposed to be keeping track – but keep in mind, this was my first pregnancy, and though 24 isn’t too young, I just had never been in this situation before.”
The doctor immediately ordered a sonogram for baby Jack. But confusingly, Jack’s vitals seemed normal. Strong heartbeat, perfect measurements, nothing out of the ordinary. They moved forward with no answers, with the only explanation being that Jack must be just “sleepy.”
“When he was finally born, he was beautiful. Full head of hair. He was moving. He was just perfect.”
A blonde, blue-eyed, handsome Jack. A thrilled, glowing, happy mom. Still oblivious to the lack of movement that occurred in the womb.
But at 3 weeks old, Jack began to lose mobility in his arms and legs.
“I remember around 4 weeks old, we went to a family birthday party. Two of my cousins work in children’s therapy, and they pointed out to me that he wasn’t trying to hold his head up. They suggested I do more tummy time with him. So the next day, I attempted it, and Jack just kind of laid there – limp – face down on the floor.”
Kristen took Jack to the doctor the following week for what she thought was the onset of a cold. She told the pediatrician about Jack’s lack of movement, that his shoulders were starting to look a little different, more “curled in.”
“The pediatrician picked up Jack’s arm and let go of it, just to see what would happen. Normally, when you pick up a baby’s arm and then let go, the baby will pull back, or resist. But when she let go of Jack’s arm, it fell flat on the floor. So we were referred to a neurologist the next day.”
They spent the next 3 days in the PICU at a McAllen, TX hospital. Blood work, brain scans, EKGs, EEGs, MRIs, every test was run on baby Jack.
Two weeks later, on October 14th, 2015, they got the call.
“We were told to come in immediately. And when you get that kind of call, you know it’s not good news.”
They sat down in the doctor’s office, and he revealed the news.
"Jack has SMA."
SMA, spinal muscular atrophy, is a neuromuscular disease that causes the wasting away or cellular degeneration of muscles. It robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe.
It is the number one genetic cause of death for infants.
And there is no cure – yet.
“There’s 4 different types of SMA. Type 4 is when you can walk, but with weakness. Type 3 is when you can’t walk. Type 2 is when you are only able to sit unassisted and hold your head. Type 1 is when you’re not able to hold your head or sit unassisted.”
Jack is Type 1.
“With somebody that’s as severe as Jack, it’s life threatening. When we feel a tickle in our throat, we can just cough. Jack doesn’t have that ability. So that explained what the "cold" was that I thought he had a couple weeks earlier. It wasn't a cold. He just didn't have the strength to clear his own throat.”
The doctor told Kristen and her family to simply go home, and try to make Jack as comfortable as possible.
He predicted Jack only had about 5-6 months to live.
“I was just in shock. But I like to think I’m a problem solver. That’s just how I am. So when the doctor was telling us that, I was just thinking about what I could do, or if there was anything else to do.”
Prior to her pregnancy, Kristen lived in the DFW metroplex, attending the University of North Texas, along with personal training and fitness motivating as “Running Kristen.” Because of that, she had connections with several people in the medical field who were able to give her some direction.
“I didn’t know then that my time in Dallas before Jack was born was going to be so important. Every person in my life has been a miracle, and every person along the way has helped more than they would ever know. That’s how I feel about this whole thing. Everything was just a spiral of butterfly effects. I knew this person, who knew this person, who got us to this hospital, where we met the right doctor.”
Kristen was able to get in touch with a Dallas neurologist who made a special exemption to get Jack admitted into the hospital as quickly as possible.
“Normally, clinics for kids with special needs are extremely hard to get into. They can be booked 6 months in advance. This neurologist told us that he didn’t have any clinic openings, but if we could get to Dallas in the next 24 hours, he would write us admitting orders and see us in the hospital the next morning.”
So that’s what they did. Kristen, Jack, and her parents packed up their van and left, making the 8-hour drive from Harlingen to Dallas that very night.
Once admitted to the hospital, Kristen received all of Jack’s life-saving equipment.
A BiPAP, a cough assist machine, a mucus suction machine, an oxygen level and heart rate monitoring machine – the whole nine yards. They even gave Jack a g-tube to administer food. Medical professionals were able to train Kristen and her parents in how to use all of the equipment on their own at home.
If having the chance to receive all of this equipment wasn’t encouraging enough, Jack was also accepted into a drug trial for SMA children on January 6th of 2016.
And on October 14th, 2016, exactly one year since Jack’s diagnosis, (and living much longer than doctors predicted), Jack started an extension of the trial, where doctors promised the drug to Jack without the option of being in a placebo group.
“He’s showing improvements!” said Kristen. “He’s actually picking up his left leg in the air right now. He doesn’t even know that he’s doing it quite yet. So this is a very exciting time for us and for the families of kids with SMA. Because right now, in this trial opportunity, we could be the ones who are the trailblazers in finding the cure.”
Though hope surrounds this drug trial for Jack and his family, the life in between injections is still one of immense difficulty. In fact, Kristen says that at times, she has to put her mommy heart aside, put her honorary nurse hat on, and perform interventions that are necessary to save her son’s life.
“Sometimes situations with him happen physically and medically where I have to forget that Jack is my child, and I go into nurse mode."
"Some of the things I’ve had to do to save his life can be very difficult, things I wish I didn’t have to do, but parents of kids with SMA simply have to do these things, no matter how torturous they seem, if they want their child to survive.”
“I mean, if one of your children was choking on a chicken nugget, or a piece of fruit, would you just sit there and cry? Or would you do something about it? It’s important for any parent to realize that, even though it is your child, and it’s something that’s hard to do, you have to take yourself, the parent, out of the situation, and get done whatever needs to get done. Because what’s the alternative? Them being gone?”
“I don’t regret any life-saving thing I’ve done with Jack. He’s still here. He’s still happy.”
Kristen says she has big hopes and dreams for Jack.
Though SMA is a physically deteriorating disease, there are many people who live with it and thrive, contribute to society, even get married and have kids.
“I have big dreams for Jack. Because you know, even though Jack has physical limitations, his intelligence is not compromised. Jack’s brain is like your son Hugh’s brain, Hannah. It’s a normal, perfect, functioning brain. He can learn just like any other child. It’s just that his point of view is very different.”
“I’ve chatted with kids on Facebook who have severe SMA, who can only communicate with their eyes. There is a software that syncs up a keyboard with their pupils, and they’re able to type that way, which is so cool. For SMA kids to have so many limitations, they’re happy as can be. They appreciate the life that they do have. And that gives me hope, knowing that if Jack’s body ever did go downhill even more, that I will have not made the wrong decision, and that he will want to continue this life, no matter what state he is living it in.”
“My ultimate dream is for him to just have as normal of a life as possible. I’d love for him to grow up and play with friends. To go to school. And this might seem small, but I’d just love for him to be able to give me a hug one day. You know?”
Kristen and Jack have now been an active part of the sma community for over a year.
She has realized, throughout this time, that her passion has evolved from what once was physical fitness for healthy people, to physical improvements for people with SMA. Her heart has produced a longing to advocate for other families who also have to experience the struggles of this disease.
“I’d love for Jack and I to travel and speak to families. Bring awareness to this disease. I love to help people. I love to talk. I love to public speak. I feel very blessed to know so much about this at such a young age, so advocating for Jack, advocating for other families, advocating for SMA, is something I so passionately want to pursue.”
Throughout our entire conversation, Kristen expressed nothing short of gratitude – especially towards her parents.
“I know this life can be so difficult and I can’t speak for every family who is going through this too, but I just know that I am very blessed to have the parents that I do. They help put food in Jack’s tummy. They help put a roof over Jack’s head. We take him on vacation. We’ve had a lot of fun going to the SMA yearly conferences - last year at Disneyland in California and this year will be at Disneyworld in Florida. It’s the happiest place on earth, and this happy place is also very wheelchair friendly, so he can participate in rides. If it weren’t for my parents, I wouldn’t be able to do those things for him.”
Kristen described her life as an SMA mom with such grace. She never once expressed fear, doubt, self-pity, or defeat.
When I pointed that out to her, her response was profound.
“When we first got diagnosed, I thought to myself that this had to be the worst thing that could have ever happened to my child. But after being in and out of the hospital so much - seeing kids with no legs walking happily with prosthetics, or kids with extreme physical deformities who are happy and thriving - I just can’t help but be grateful and feel blessed. I’m lucky to have Jack. I’m so happy to be his mother. And I’ve come to realize that this isn’t a mistake. I was given Jack because God knew I could take care of Jack. I feel honored to have been chosen for this.”
Jack, Kristen, and her family will be traveling back and forth from Harlingen to Dallas every 4 months for the drug trial for the next couple years.
While insurance doesn’t cover the travel, or the diapers that Jack will wear for many years, or Jack’s pricey g-tube diet, and only partially covers certain medical equipment, Kristen says she is so blessed that the pharmaceutical company facilitating the trial pays for the drug, hotel stay, and hospital bills in full.
“For people or families who are dealing with SMA, I think it’s so important for others to simply remind these families that they’re not alone. That you’re there for them. Because any little thing that anybody does is such a big thing. I know SMA homes can be fragile to be in, but just call ahead of time, bring them a Starbucks or a pizza, and just hang out. Sure, we all get busy, we get caught up in our own independence, but we really just need our friends and family in times like this.”
Kristen and Jack – the world admires your strength. Your hope. Your tenacity to persevere, to have a hand in finding a cure, and to make a difference in the lives of so many others in the process.
I know you've made a big difference in mine.
For now,
GO, JACK, GO!
RUN, KRISTEN, RUN!
Keep kicking SMA’s ass. We’re all cheering for you.
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