Medical breakthroughs help two families find hope for their kids

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Medical breakthroughs help two families find hope for their kids. (KTRK)

Imagine your child growing up normal during the first years of their lives. Then, something drastically changes.

At six-years-old, Will Herdon experienced this drastic change.

For Aiden Maxwell, it happened much earlier.

At one-and-a-half, Aiden was already speaking simple sentences. But just before he turned two, he began to suffer from seizures and his mental development was severely impaired.

He went back to no speech, he was destructive, he would just tear stuff down and there's no 'mamma, I love you' anymore all because of one mutated gene," Lisa Maxwell, Aiden's mom, said.

Holding back tears, Lisa says, "I don't know what is worse, having a child that's broken or watching your child become broken."

Aiden was diagnosed with tuberous sclerosis, a genetic disorder with epilepsy-type symptoms that causes tumors to form in different organs including the brain.

She goes on to say, that you take it day by day and look for the small victories. One of those small victories came when Aiden was selected as one of ten children to participate in a Duncan Neurological Institute drug trial.

Researchers believed an existing cancer drug could help children like him.

Dr. John Swann said, "We gave the drugs to the mice and they stopped having seizures. The results were spectacular. Just like in the mice, the kids stopped having seizures. Not every child became seizure free, but the vast majority of them had decreases in seizures."

The drug trial proved to be successful. Within 6 months Aiden's speech was clearer, he could read, and do math," Aiden's mom said.

Aiden's speech is limited, but his knack for online gaming helps him connect with other children.

After two years Aiden's seizures returned, but aren't as frequent. Fortunately, they are hopeful that a new surgical trial in the works could help him soon.

Aiden wants to be a doctor when he grows up.

Lisa Maxwell is grateful for Dr. Swann and his research. She was able to express her gratitude in person to him. "I got to talk to Dr. Swann and it was very rewarding for me to get to look him in the face and shake his hand and say you have changed my son's life. Thank you for being the person willing to sit in the lab and think these things through and change people's lives," she said.

Lisa's advice to other parents, "Just take one day at a time and be thankful for what you have...I know that there are people out there with children like Aiden who can't even hear a simple 'I love you', so we're lucky."

Will Herdon's story is very much like Aiden's in that he also had a normal childhood.

Will's mother and father, Missy and Wayne, recount their son's childhood. She says, "He was so happy all the time. He always loved animals, we call him the animal whisperer." Wayne adds, "He loves driving. We've always had an electric car (pick up) and he's always had like a drift trike or one of those razor scooters."

They also said he was very active, playing soccer and winning awards for his speed on the field.

He is also a very affectionate brother, always concerned with the well-being of his siblings Steele and Magnus, although now it's Will's brothers making sure he's okay.

Shortly after he turned 6, Will's parents noticed that he was having trouble identifying the colors of crayons and remembering the alphabet. This all occurred within days.

Will became legally blind within a couple of months and then started having memory lapses.

Will started to have trouble remembering the meaning of words and what objects around the house were called.

After months of testing, the Herdons received a life-shattering phone call. Missy remembers, "When she said juvenile Batten disease...I can literally remember dropping to my knees in the kitchen."

Batten disease is a neurological disorder that affects an otherwise healthy child. They begin to show symptoms somewhere between the ages of five and ten with progressive vision loss, loss of cognitive skills, and mobility.

The most devasting fact--Batten disease is always fatal, often by the late teens or early 20s.

This was not the final straw for Missy and Wayne. They refused to give up hope.

Missy began to send out prayer request by email with a picture of Will.

In the email, she explained that there is no active research for Batten disease and that they desperately needed a cure.

These emails reached a family in Austin whose daughter also had the disease. Together they started a foundation and within a year raised $2.5 million to form a Batten disease research team at the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children's Hospital.

The only one its kind, the NRI fosters collaboration from the most brilliant minds in the world with the goal of developing treatments for childhood neurological diseases.

Dr. Huda Zoghbi, Director at the NRI says, "The Batten disease research team has discovered a protein that is responsible for clearing, if you will, all the metabolic garbage and waste in our cells."

And most recently they have discovered a way to increase the activity of this protein to hopefully help clear the excess debris that is accumulating in someone with Batten disease.

Dr. Zoghbi says the results have been beautiful and hopes the team will take this treatment for testing in humans to see if it will slow down neurological degeneration or even prevent it in patients with Batten disease.

Meanwhile, Will turns 15 this month. His mother explains, "Will's brain cells are dying about 4.6% a year, that's a lot."

His family remains hopeful.

Will's mother says, "It's very inspiring to live with somebody who when they wake up they can't see anything and truly don't know what's in front of them, don't know what their day holds for them and how they're going to feel but still just plug straight away and that's what he does. He really is quite an inspiration for our family."
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