‘More than love.’ Fort Valley family celebrates 6-year-old’s birthday amid rare disorder
A Fort Valley boy celebrated his sixth birthday on Nov. 2, which his mother deemed a “milestone” given the boy’s rare disorder and the fact that doctors only gave him 6 to 10 years to live.
Jh’Mael Jackson, nicknamed Mael by his family, was diagnosed with infantile neuroaxonal dystrophy in 2021. INAD is a rare disorder that affects the body’s nervous system and often causes loss of vision, muscular control and mental skills. It has no cure, according to the National Institute of Neurological Disorders and Stroke.
Doctors believed Mael’s life expectancy was between 6 and 10 years, according to Sherthea Jackson, Mael’s mother.
Jackson had a sense something was wrong with Mael when he exhibited concerning symptoms just after his first birthday, but she struggled to convince doctors that something was wrong with her child. Other than Mael having a urinary tract infection so young, Jackson noticed that he was regressing.
“Jh’Mael used to have perfect posture, completely perfect posture,” said Jackson. “And the first thing I saw that went on, he was leaning forward ... then I noticed shortly after his eyes crossed.”
Doctors believed Jackson was overreacting, Jackson said. After attempts to figure out the root cause of Mael’s symptoms through extensive medical testing, Jackson thought about getting a genetic test done. A geneticist in Atlanta went through multiple panels, and after Jackson’s adamance, the doctor finally figured out an explanation for Mael’s symptoms through INAD.
Feds say Jackson faced illegal behavior from apartment
In her effort to care for her son, Jackson tried to get a first-floor apartment so she could more easily take Mael and his needed medical equipment in and out of their home. But Indian Oaks Apartment, where Jackson lived with her three children at the time has been accused of ignoring her requests for accommodation once Mael was diagnosed in 2021. Federal prosecutors have sued the apartment complex, alleging illegal denials for help.
Jackson asked “at least twice a month for the next 12 months” to move to a unit on the ground floor. Once Mael turned 4, Jackson couldn’t carry him up and down the stairs to their apartment, causing him to miss treatment and harming the whole family, according to the lawsuit.
New owners eventually took over the apartment and quickly accommodated Jackson’s request. But Jackson said the family still faced issues. Workers had painted over black mold on the walls and ceilings of the apartment, the floor was wet due to dripping water, the air condition ididn’t work and there were flies on the window curtains. Jackson said her children got sick form the mold.
Once Indian Oaks Apartment had a new owner, Jackson and her three children were moved into a hotel and were given money to accommodate their living expenses. However, the family still struggled when they moved back into the apartment complex in a ground-floor unit.
Two months ago, the family moved into a house with ample yard space.
‘Baby, you are more than love.’
Even with the struggles of caring for Mael, Jackson says she welcomes “help once it’s given.” During Mael’s party, that included her mother renting a bouncy house for the kids, her sister bringing cake pops and decorated pretzels, and her two oldest children ensuring Mael was fed and entertained despite his condition.
After settling into the family’s current house, Mael “has been thriving a whole lot more,” Jackson said. The boy impresses his doctors with the weight he’s gained and, although the doctor has expected some issues to arise from Mael, he has not seen any. Jackson considers that a blessing.
“Since then, I’ve just been trying to give Jh’Mael the best life,” said Jackson. “I still just trying to keep him in good spirits, letting him know, like, ‘Baby, you are more than love.’”
This story was originally published November 6, 2024 at 11:26 AM.
