Fifteen-year-old Savitri Yami Baker loves to belt a tune.
“They can hear her from three houses away,” Savitri’s 26-year-old sister, Victoria Ajene, jokes.
This comes as a surprise, as Savitri often has challenges breathing when she speaks. The Clovis, California, girl has the neurological disorder cerebral palsy.
“She’ll speak, and before she finishes her sentence, her breath will run out, and she’ll just struggle to get the breath out. However, when she sings, there is no problem. She hits every tone, every note, loud, clear,” said Beverly Baker-Ajene, Savitri’s mother.
Beverly, Victoria and Robert Ajene, Savitri’s 23-year-old brother, are among those who know Savitri best, from her contagious smile to her teenage mood swings.
“I think about Savitri and who she is and how people perceive people with disabilities,” Baker-Ajene said.
“Savitri’s African-American. Savitri’s Muslim. Savitri’s a woman. She’s in the disabled community. She has special educational needs,”
Baker-Ajene said. “I want people to understand that there’s a person here, there’s not just a group or a statistic. We’re people … people with hearts and lives and hopes and dreams and fears and wishes.”
‘All about the family’
Savitri’s family – along with other families of children with chronic or complex special needs – was featured in a photography project titled “The Super Parents,” debuting on CNN on Wednesday.
The project was produced by the Lucile Packard Foundation for Children’s Health, whose programs advocate for a better system of care for children with chronic health problems and their families.
“We want to highlight not that these children exist but these families exist,” said Dr Edward Schor, senior vice president of programs and partnerships at the foundation.
“I tend to not look on the lives of children with special needs as a child issue so much as it is a family issue,” he said. “If a doctor says, ‘Please give this medicine,’ well, it’s the parents who are giving the medicine. If the doctor says, ‘Make an appointment to see a specialist,’ it’s the parents who have to make the appointment and then take off work and make that additional appointment. If the child is ostracized in some way, it’s the family who has to protect them from that or explain it. So, it’s really all about the family.”
After Savitri was born as a surviving twin, Baker-Ajene said, she left her career in grant funding for research to care for her daughter full-time – which is common for some families of children with chronic illnesses.
“If the child has, in any way, a severe or complex condition, there are likely to be financial adjustments that families are going to have to make,” Schor said. “National data show that a very large proportion of these parents either have to cut back or stop working in order to care for their child.”
Now, Baker-Ajene’s day begins at 6 a.m., when she uses a pulley-like harness to transfer Savitri out of bed to dress her and to help get her ready for the day.
“It was incredible to see,” said Deanne Fitzmaurice, the Pulitzer Prize-winning photographer who took the photos in the project for the foundation.
“There are so many pieces that are involved. Not just the daily tasks like getting her ready … but also the medical aspects,” said Victoria, Savitri’s sister.
“I don’t have to worry about my sister’s well-being as long as my mom is around taking care of her, because I know she stays on top of it,” Victoria said. “She’s done it on a daily basis for 15 years, disregarding any personal thing she might be going through or any medical thing, and she has to do all that by herself, for the most part. That’s really super.”
As many parents of children with chronic health conditions devote their lives to caring for their children’s medical needs, their own physical and mental health sometimes suffer, Schor said.
“There have been previous studies that have found that … approaching half of the parents of kids with chronic problems will screen positive for depression,” Schor said.
“In general, it is recommended that children with chronic conditions are regularly reassessed in terms of their health status and functioning status and so on,” he said. “We believe that assessing the parent’s physical and mental health should be part of that child health assessment.”
What the future holds
In the United States, nearly 20% of children have a special health care need, such as a developmental disability, a chronic illness or a birth defect.
What’s next for these children and their families isn’t clear. The Affordable Care Act, or Obamacare, has mandated that insurers in the health insurance marketplace cover treatment for anyone with such pre-existing medical conditions, which put an end to health plans limiting or denying benefits to children due to a pre-existing condition.
President-elect Donald Trump has pledged to repeal and replace the health care law throughout his campaign, and now many Americans are waiting to see his administration’s plan of action.
Although Trump has said he’d like to keep coverage of pre-existing conditions and some other parts of the ACA, repealing and replacing still scares Baker-Ajene, she said.
“So much of Savitri’s care and well-being is due to the fact that we had access to medical needs that we may not have otherwise had. … It scares me that they’re talking about taking away these rights or privatizing them,” she said.
“There’s a point where I have to just stop and say ‘OK, let me see what’s going to happen,’ ” she said. “I have no idea what the climate is going to be.”