‘Hope For Hadleigh’ Offers Assistance to Tuscaloosa Infant Struggling with Extremely Rare Genetic Disorder
Hadleigh Archer is just five months old, and yet she's already endured more than most will in a lifetime.
It's a Wednesday afternoon, and I'm sitting in the living room at Hadleigh's home; I came here to talk with her family about this tiny girl's extraordinary strength in the face of such tremendous adversity. Hadleigh's mother, Kiersten, holds her close, fussing with the frilly trim of Hadleigh's seersucker onsie.
Kiersten's mother, Inge, looks at them both, her eyes brimming with pride, love, and concern.
"She's already been through so much," Inge says, and from the expression on her face, I know it's true.
Hadleigh Archer started her life as a seemingly healthy child, but one day Kiersten noticed something was wrong.
"I'd taken her for her two-month shots, and I noticed she'd become extremely lethargic," she says.
Lethargy can be a common symptom following scheduled immunizations, but Kiersten could just tell something was wrong. She listened to her mother's intuition and brought Hadleigh to DCH Regional Medical Center.
The next thing she knew, Hadleigh was being flown via helicopter to Children's Hospital in Birmingham. Little Hadleigh was transferred to the Intensive Care Unit while she fought for her life.
The medical team at Children's was able to diagnose Hadleigh with a genetic disorder: MTHFR Mutation.
"It's an extremely rare condition," Inge tells me as she helps Keirsten place a headband on Hadleigh, "There are less than 200 cases."
"A year?" I ask.
"Ever," Inge replies. "She was the first case they'd had at Children's Hospital."
Hadleigh's genetic disorder makes her body unable to process folate or folic acid, and this means her body struggles with elevated levels of an amino acid called Homocysteine. This puts her at greater risk for heart disease, cancer, stroke, and many more health problems. MTHFR Mutation also causes acquired hydrocephalus in children, a condition in which excess cerebrospinal fluid builds up in the brain, placing harmful pressure on the brain and other vital organs.
Since that first trip to Children's, Hadleigh has been back many times. She's had surgery to give her a feeding tube. She's had surgery to place a shunt in her brain following scary bouts with hydrocephalus.
"The good news is that her condition is treatable, but not curable," Inge says."
Those treatments, unfortunately, cost money. A lot of money. And Hadleigh requires constant care. Since she has a feeding tube, she's not able to attend a normal daycare facility. Kiersten cannot work, as she must stay to care for Hadleigh.
Hadleigh also needs special vitamins and supplements to treat her condition, and part of her treatment plan is taking them daily.
"Insurance won't cover it," Kiersten tells me--one more thing for this already overwhelmed mother to worry about.
I found out that there has been a GoFundMe account set up to help the Archer Family. To date, over $4,000 has been raised for Hope for Hadleigh. Family members also created a special Facebook group where friends can keep up with little Hadleigh.
I watch as Kiersten and Inge fuss over Hadleigh. I can tell they love this child beyond measure. I look into the baby's big, beautiful eyes and feel tears welling up in my own as Kiersten moves Hadleigh's headband to cover the scars from her most recent surgery.
I wanted to take a photo or two of Hadleigh before I left that day, but as all five-month-olds are want to do, she became a little fussy. As I walked back to my car, I hoped that one day, I could be a mother as strong as Kiersten--and half the fighter Hadleigh is.