Three-year-old Charlotte Hale has hundreds of seizures every day.
She was born with brain malformations and Lennox-Gastaut Syndrome, an extremely rare form of childhood epilepsy affecting an estimated two out of every 100,000 children, according to the National Organization for Rare Disorders.
Charlotte’s condition has required 24 hospital stays so far and five days a week of physical and speech therapy. Surgery is not an option due to the complexity of her brain malformations. Her story was first reported by local news station Fox2 Detroit.
Despite all their hard work and the support of family members, her parents are now struggling to provide the specialized care their daughter needs, especially in a house that isn’t handicap accessible. But they’re not giving up.
Sgt. 1st Class Jason Hale, 44, a soldier with Active Guard Reserve, currently serves as a public affairs chief with the 220th Public Affairs Detachment in Southfield, Michigan. Prior to joining the Army Reserve, he served seven years as a senior sniper in the Michigan Army National Guard, deploying to Iraq and Afghanistan.
“I’ve never felt more helpless in a situation,” Hale told Military Times. “I’ve served combat tours in Iraq and Afghanistan, but to be in a situation where you’re holding your little baby daughter and watching her go through these seizures with nothing you can do about it is so difficult.”
His wife Mary had to quit her job as a property manager to care full time for Charlotte and their two boys, 6 and 9.
Jason Hale spoke with Military Times in a civilian capacity while on leave from the Army.
Charlotte’s condition was first diagnosed in 2018 at the 20-week ultrasound. Hale was attending the Advanced Leader Course at Fort Meade, Maryland, at the time.
About six weeks after Charlotte was born, Hale was gone again, this time at Fort Hood, Texas, preparing for a deployment with his unit while his daughter was experiencing her first serious seizures.
“In the first 10 days I was down at Fort Hood preparing to go overseas, the seizures got worse and Charlotte ended up going to the hospital… It finally got to the point where they sent a Red Cross message to me,” Hale said. “I’m so thankful to the Army. Literally within a few hours of receiving that message, I was pulled from training, pulled from that deployment, and on a plane heading home.”
In addition to the two to 15 tonic seizures Charlotte experiences daily, she also has somewhere around 100 myoclonic seizures — brief epileptic muscle jerks — every day. Her weak muscles create difficulty with everyday tasks like swallowing, coughing and bathing.
Of the 24 times she’s been hospitalized, eight or nine stays have been for severe cases of pneumonia after she swallows her food or saliva into her lungs, Hale said. Charlotte has been placed on a feeding tube as a result.
His wife told a local news station that she’d recently taken a CPR class so she’d be able to revive Charlotte herself when seizures stop her breathing.
Perhaps the greatest difficulty in continuing to provide Charlotte with the best care possible is the family’s home near Southfield. Purchased before Charlotte was born, all the bedrooms are on the second floor, Jason Hale said. As Charlotte has grown, it’s become increasingly more difficult to safely move her around.
“Trying to carry her up and down the stairs, and getting her in and out of a bathtub that’s not handicap friendly is getting more difficult, and honestly more dangerous,” said Jason Hale. “[We want to] build a first-floor addition onto our house to give her the room and access she needs for all her medical equipment.”
With immediate family just down the road to step in when things get difficult, moving isn’t an option for the Hales.
“We wouldn’t be able to survive if we didn’t have family living close by,” Jason Hale said.
To help the Hales renovate their home to meet Charlotte’s needs, you can make a donation on the family’s GoFundMe page.