ROGERSVILLE, Mo. (AP) - Chris and Ashley Markum have always been fighters. They met when Chris Markum took a martial arts class in college that Ashley was teaching.
Sixteen years later, they’re still fighting, but now it’s for their son Ayden.
Ayden Markum was born on Jan. 31, 2013. Complications during the pregnancy forced Ashley Markum to deliver him prematurely at 26 weeks, 14 weeks early.
LuAnn Cowan, a registered nurse in the neonatal intensive care unit (NICU) at Cox South, said that nationally 90 percent of children born at 26 weeks survive. However, they are at higher risk of disabilities.
“I think in any traumatic experience like that, people don’t always respond knowing the future,” Ashley Markum said. “You always try to think positive, but, for the first time in our lives we really were scared.”
Ayden spent 98 days in the NICU. The family lived in West Plains at the time, and the hospital was about 100 miles from their home. Chris Markum was left to work and take care of their other children. For the first time, they had to rely on family and friends for help.
“It was a very humbling time,” Chris Markum said. “Just feeling powerless. Feeling out of control of the circumstance.”
When Ayden finally did come home, the Markums hit the ground running trying to make up for time they lost being in the hospital. They put Ayden in therapy and made appointments with specialists.
However, as Ayden got older, at 1 year old, at 18 months old, he wasn’t hitting the normal developmental milestones.
“It wasn’t until those times came and passed that we started really realizing and everything started sinking in.” Chris Markum said. “He’s not going to be able to crawl, he’s not making sounds, he’s struggling with feeding.”
They noticed the first seizure when Ayden was 18 months old. They went to a neurologist who did an electroencephalogram (EEG) and confirmed he was having seizures. Around this same time, he was also diagnosed with cerebral palsy.
Ayden was having about 100 seizures a day that would come in clusters of 25 or 30 at a time. They could be subtle, such as sporadic eye movement. They could be more pronounced, like when his arms would shoot up in the air and his head would turn to the side. They would always leave him lethargic and drowsy afterward.
Ayden had hypsarrhythmia, which is a disorganized, chaotic pattern of brain waves that occurs in children with infantile spasms. It was affecting his development and constantly damaging his brain. They had to do anything they could to stop the seizures.
They started trying medications to get them to stop. Ashley Markum said she lost count of all the medications they tried, but they all had something in common. They all had side effects but didn’t stop the seizures. The daily steroid injections they gave him caused him to lose his ability to swallow. He is now fed through a feeding tube in his belly.
After the steroid injections didn’t work, they had three options left. A special diet, which wasn’t desirable because he has only one kidney and liver problems. Brain surgery, which they felt was too risky. Or they could try cannabinoid (CBD) oil.
They opted for the CBD oil.
“We’ve seen cognition, more smiles,” Ashley Markum said. “He’s more alert and his head control is a little bit better. Most of all, we’ve gone several days without a seizure and one time we went 18 days in a row without seizures. That had never happened before.”
Two months after his first dose of CBD oil, an EEG showed that Ayden’s hypsarrhythmia was gone, the Springfield News-Leader reported. They’ve seen no ill side effects from the oil.
His seizures haven’t stopped completely, though.
On June 12, Chris, Ashley, and Ayden Markum were at TheraCare in Springfield meeting with specialists about getting an eye gaze communication device. Ayden was in Ashley’s lap when a loud noise caused him to have a seizure. His right arm shot out and his body became stiff. Ashley supported his head and held him close until the seizure passed a few seconds later. Afterward, she soothed him as he cried until he fell asleep.
In 2015, a friend took Ashley and Ayden to a NORML meeting. NORML stands for the National Organization for the Reform of Marijuana Laws. They decided to get involved.
They started collecting signatures to get medical marijuana on the ballot. They traveled to town hall meetings to tell people their story. Ashley became a notary so she could notarize signatures on petitions. Chris, who is a nurse, wrote about the benefits of cannabis from a medical perspective.
Even though Ayden is able to get CBD oil, which has helped with his seizures, he isn’t able to access medicine that contains tetrahydrocannabinol (THC), a chemical compound found in cannabis that is illegal in Missouri. Since he has muscle spasticity, a condition that causes his muscles to continuously contract, causing stiffness and tightness, the THC would help his muscles relax and possibly prevent future surgeries.
“As parents of a child like Ayden, we’re just trying to give him the best possible life.” Chris Markum said. “We’re trying to make him as comfortable as possible, give him every opportunity to grow and develop as normally as possible.”
“Had he been able to try CBD oil before most of the other seizure medications, maybe he would still be able to eat,” Ashley Markum said. “Maybe he wouldn’t have some of the issues he does have. It shouldn’t be a last resort. It should be talked about as a front-line treatment.”
Ashley Markum said friends of Ayden’s that could’ve benefited from medical marijuana have died before they were able to access it. She doesn’t want that to happen to anyone else. Their main goal is to help people get the medicine they need without having to jump through hoops.
Chris and Ashley Markum are cautiously optimistic that one of the medical marijuana measures on the ballot will pass this November.
“I believe just getting it onto the ballot was the majority of the battle.” Chris Markum said. “I think most common sense people agree with our perspective.”
Chris and Ashley Markum are hopeful that Ayden will continue to make progress and meet goals like his five brothers and sisters. They realize his goals will be different but would like to see him be able to communicate, to start eating again without his feeding tube, and to progress to the point where he can take care of his own basic needs.
When asked what Ayden has taught them, Ashley Markum quickly said, “Everything.”
He’s taught them to be more patient and to slow down and enjoy every moment while they can. He’s taught his brothers and sisters to be empathetic, and they’ve had to grow up a little faster than other kids their age.
At times when Ayden wasn’t doing so well, some of the younger kids asked their parents if Ayden was going to die.
“I would have to say, ’I don’t know,’” Ashley Markum said. “As sad as that is, I feel like that is a life lesson in that we don’t control everything. We can’t always make everything better as your parents.
“I feel like that’s where our faith has come into play too. Just relying on God and something bigger than us. That there has to be a purpose to everything we go through. There has to be a reason and just holding onto that.”
The Markums will find out in November if all the work they’ve put into getting medical marijuana passed will pay off. If it does, they have their sights set on the next hurdle.
“We don’t qualify for Medicaid, we don’t qualify for nursing,” Ashley Markum said. “All those things that could help our family as a whole, to make progress for Ayden. It’s not just the cannabis, we hope to continue to affect legislation for other things.”
In other words, they will continue to fight.
___
Information from: Springfield News-Leader, http://www.news-leader.com
Please read our comment policy before commenting.