Miller Thweatt is only 3 years old, but he’s already had to go up against Goliath.
Miller has a rare mitochondrial disease that doctors say always proves fatal, usually in two to three years. But Miller keeps slaying the giant-sized challenges in front of him.
“He has done nothing but get stronger and healthier and happier, which is extremely unusual,” said his mom, Jacque Thweatt. “He’s happy. He’s a happy little boy.”
A website called Go Shout Love is featuring Miller’s story this month in an effort to help his family with expenses. The website (GoShout.Love) sells merchandise and gives the proceeds to families who are on rare medical journeys.
Miller was delayed from birth, but his parents and pediatrician assumed it was from being born about six weeks early. When he reached 8 months old and was not crawling or even sitting up, their pediatrician sent Josh and Jacque Thweatt to Dallas to see a neurologist.
Miller also started having a rare type of seizures. An MRI found lesions on his brain, and doctors ordered an extremely rare type of blood work. The Thweatts had to wait six months for the results. Finally, on Feb. 28, which was rare disease day, the anxious parents got the news. Miller had Leigh Syndrome, a rare disease of the mitochondrial (cells in the brain that produce energy) for which there is no cure.
“All of our hopes and dreams seemed to evaporate,” Jacque said. “We were on a tail spin. All of a sudden, we didn’t know up from down.”
Leigh Syndrome is caused by a genetic abnormality. Both Jacque and Josh were tested, and Jacque learned she is the carrier. She is 13 percent affected by the abnormality; Miller is 97 percent affected. In addition, if they were to have another child, it would have a 25 percent chance of being affected and almost a 100 percent chance of being worse than Miller.
The Thweatts were not about to sit back and watch their child deteriorate. They were determined to make the most of whatever time they had left with him. They started by connecting with other families who had walked the same path.
“We’ve learned a lot from them,” she said. “We found supplements. We even found a mom whose mission is to help other people get healthier – particularly from Leigh Syndrome.”
Jacque said talking with that mom gave her not only useful information but also hope.
“I felt hope for the first time in a while,” Jacque said. “She has been a huge blessing.”
They also decided not to hide Miller away at home but let him have as many experiences as he could. He goes to the West Texas Rehab for therapy and attends preschool at Wylie East Elementary. He has even learned to use a specially made walker on loan from the Rehab.
“We try to live a normal life as much as possible,” Jacque said. “We have to be careful that we don’t overdo it. He can’t go all day long.”
Because Miller is nonverbal, he is also learning to use a specially made iPad to help him communicate with his eyes.
“He is definitely delayed, but he understands what’s going on around him,” Jacque said. “We try to make his life as typical as possible. We want quality over quantity for him. It’s very important that he not be bed ridden. We don’t want him to have to live like that.”
One of the families that connected with the Thweatts had a son in a similar situation to Miller. Their son was featured on Go Shout Love a year ago. He passed away several months later, but his family nominated Miller to be featured.
Fifty percent of website (GoShout.Love) sales in February go directly to Miller and his family, and 90 percent of any donations made in February go to his family.
“We want to make our house more accessible for him,” Jacque said. “We want to make it accommodating, so he can do what he wants to do. Having a special needs child is very expensive.”
The website even developed a shirt especially for Miller that feature’s David’s slingshot and the words “See Beyond The Giant.”
“We’ve used the David and Goliath story for him his whole life,” Jacque said.
You can see a video and podcasts at GoShout.Love, and you can also learn more about Miller from Jacque’s blog at Goliathsandgrace.com. Purchases and donations must be made in February to go to Miller.
Jacque said she and Josh were originally very private about their journey but decided to try to raise awareness for the disease and for what Miller has endured and accomplished.
“This little boy is going through hell, and he’s still the happiest little boy you will ever see,” she said. “It puts life in perspective. We try to be in the moment a lot – soak him up.”