Annelizabeth, or Annie (but never Anna, she says), first came to Boston Children’s at Waltham two weeks after she was born.
Her mother Elcie wasn’t expecting that her fourth child would need special care. “It was a difficult pregnancy. I was very excited and relieved when she was born.” But that sense of relief turned to surprise shortly after Annelizabeth’s birth.
She tells me, ‘Mommy, I’m a big girl. I’ll go by myself,’ when it’s time for her blood draw.
Elcie had undergone prenatal screening for sickle cell disease, and her baby had tested negative.
After Annelizabeth was born, her first test for the disease was positive. Her second test also came back positive, and Annelizabeth’s pediatrician referred the newborn to Dr. Rachael Grace, a hematologist at Boston Children’s.
“Dr. Grace explained what sickle cell disease meant. I hadn’t known before,” says Elcie. Grace sees patients twice weekly at Boston Children’s at Waltham, allowing the Jean-Baptistes to stay close to home for Annelizabeth’s ongoing sickle cell care.
Charleen Colleran-Lombardi, a social worker at Boston Children’s at Waltham, is an important part of Annelizabeth’s care team, too. She’s been by Elcie’s side since Annelizabeth’s diagnosis was confirmed, helping Elcie and her husband Maguerre manage their daughter’s care.
“We started learning everything we could about sickle cell disease. It’s so hard when they are little babies and can’t tell you they are in pain,” says Elcie. …
Carolyn Milks turns 8 on August 21. It’s a big celebration. Carolyn and her family aren’t just celebrating her birthday — they’re celebrating Carolyn’s return to normal. For most of the summer, things like swimming, riding her bicycle and horsing around with her sisters and cousins had been out of the question for Carolyn.
“This is what kids really want. They just want to be normal and do their normal activities,” says Carolyn’s mother Kristen.
It had been a topsy-turvy spring for the Milks family.
My heart and mind froze. Her whole left side was weak. … Only one part of the body controls both the arm and the leg. I thought, ‘Carolyn has something wrong with her brain.’
Carolyn, normally a bright, active second grader, started having puzzling symptoms in March.
“She was having a hard time concentrating on her homework and was crying, and my husband and I couldn’t figure out why,” recalls Kristen.
Over the next few days Kristen, an occupational therapist, began observing strange movements in her daughter’s left arm and hand. Carolyn appeared to struggle with everyday activities like holding a pencil, tying her shoes, and she even tried to switch her hand dominance. Kristen set up her phone to video Carolyn.
At the end of the week, while Carolyn, her twin sister Laura and their big sister Emma, were playing at a trampoline park, Kristen watched the videos.
“I was becoming alarmed at what I saw with the functioning in her left arm and hand. Later that day, I watched Carolyn almost fall doing a back bend. Her left arm didn’t hold her weight. And then when I watched her walk, she almost fell a couple of times; she didn’t have full control of her left leg. My heart and mind froze. Her whole left side was weak. … Only one part of the body controls both the arm and the leg. I thought, ‘Carolyn has something wrong with her brain.’” …