Miller is a brave, resilient, and joyful three year old boy. He resides in Abilene, Texas with his mom, Jacque and his dad, Josh.
Some of his favorite things are Mickey Mouse, being outside, and going to school. Miller’s positive and determined spirit proves that he will not be defined by a diagnosis. He continues to show medical professionals that he blazes his own trail.
Jacque had a typical and routine pregnancy until she hit 28 weeks. That is when the doctor noticed that she had low amniotic fluid. It was so low that she was admitted to the hospital that day and was expected to deliver the baby if the fluid did not level out. They never did discover why the amniotic fluid was so low so they had her stay in-patient for six weeks until the baby was 34 weeks. After determining that the fluid was still too low, doctors scheduled a c-section. When Miller was born he needed help breathing and eating. He was on oxygen support for three weeks and had an NG tube to help with feeds and to supplement what they could get from nursing and bottles. Miller was discharged from the hospital a month later and Jacque and Josh began to settle into their life at home with their new baby.
As Miller was growing, Jacque and Josh noticed that he had low muscle tone and it did not continue to improve, it only got worse. When Miller was around eight months old they took him to the children’s hospital to get checked out. The physicians reported that they were not terribly concerned, but ran some tests. The tests showed that some of Miller’s levels were a little off, but they felt that immediate action was not needed. An MRI was scheduled for a couple months later and Jacque and Josh continued to watch him closely to see if anything changed with his behavior.
A month later, at nine months old, Miller started having infantile spasms. Jacque shares, “We didn’t know that at the time. We just saw he was having really strange jerks he couldn’t get out of. They would progress at 15 at a time. We knew something was up.” They got an appointment with their pediatrician and two weeks later found themselves at the children’s hospital again. They were admitted and it was quickly confirmed that Miller was indeed having infantile spasms and they began running the full gamut of testing on him.
An MRI revealed that Miller had lesions on his brain and that this meant he had some sort of mitochondrial disease, but doctors were unaware of the severity of it at this time. Although they were unsure what exactly they were dealing with at the time, Jacque shares, “We were devastated. All our dreams and expectations kind of just flew out of the window.” They took blood from them and from Miller and it was sent off to the labs so they could discover what they were dealing with. Jacque and Josh did not receive the results of this test for six months. During this waiting period Miller was still having spasms and he had developed a second type of seizure. An EEG was completed and they confirmed the different type of seizure he had developed and he was placed on a new medicine protocol. They were still left grappling for answers as to what was going on and why this was happening to their son.
Several months later they received a call from their neurologist and he reported to Jacque and Josh that Miller had something called, Leigh’s Syndrome. Jacque shares, “We were both at work and I immediately googled Leigh’s syndrome and that’s a terrible idea for anyone to do. Life expectancy said 2-3 years.” Leigh’s syndrome is a severe neurological disorder that is characterized by progressive loss of mental and movement abilities. Jacque explains, “His body is essentially trying to run off of a much smaller energy source than it can sustain. It’s the equivalent of running a house on a nine volt battery. Eventually that battery is going to lose all of its power.” There is no cure or treatment at this time for Leigh’s syndrome and due to how quickly the disease can progress, there is not enough information about it in order to complete enough proper research studies. Jacque shares, “We really are just kind of taking a stab in the dark, as are our doctors.”
Jacque and Josh immediately began researching different approaches, studies, and the Leigh’s community. They received a lot of wisdom and advice from different families who have walked a similar road and from doctors who were working on discovering more about Leigh’s syndrome. A short time after Miller’s diagnosis he had quit smiling, laughing, and babbling. The doctors were able to prescribe him sodium bicarbonate shortly after he lost his ability to smile and that resulted in Miller regaining the ability to smile. Since then Miller has continued to progress. Jacque shares, “He does not respond the typical way Leigh’s kids do from illnesses. Typically when a child gets ill when they have Leigh’s syndrome their energy depletes. When they get sick the disease progresses and their ability regresses. Miller is actually the opposite of that. It’s almost like he bounces back stronger.”
Although they do not have a lot of answers as far as Miller’s prognosis goes, he is doing better than his doctors ever predicted. Jacque and Josh continue to embrace each second they have with him. Jacque shares, “It’s just amazing that we get to be in the front row of his life and learn from him. Being with Miller and doing what’s best for Miller and making him happy is kind of our life goal right now.” Currently, Miller uses a gait trainer to get around, which has allowed him a lot of freedom and independence. Josh shares, “A lot of time he’s an ornery three year old kid and that’s great to see that.” Jacque and Josh’s next goal for Miller is to obtain an eye gaze for him that can allow him to effectively communicate. It would provide him with the ability to speak using his eyes through a tablet. Miller also goes to two different schools where he and his family are very loved and supported.
Miller has more giants set before his path than most of us will ever face, but each time he is able to push past them to the other side. Join us as we rally around his family and continue to encourage Miller to see beyond the giant.
Time to get loud shouters!
Throughout the month of February we will be shouting love for Miller and his family. It is a great honor to be able to tell Miller’s story and we hope you will join us in getting to know him and his family.
Join us in shouting loud for Miller!
Special thanks to this month’s lead sponsor: Battles Home Improvement.
Battles Home Improvement has proudly been serving the Abilene community for more than 60 years, transforming bathrooms, kitchens, exteriors, and more into beautiful and functional living spaces for your family. Visit ARemarkableHome.com for more information and to learn more about the great team at Battles Home Improvement.