Bossier City resident Deshae Lott was 5 years old when she started having trouble walking — the first symptoms of a rare and serious disease that would mark her life.
By age 11, she could no longer climb stairs. By 17, she couldn't walk. And by age 31, she couldn't breathe on her own.
Lott’s diagnosis of Limb Girdle Muscular Dystrophy is rare. The Centers for Disease Control and Prevention noted the best research has been done in England, where two out of about every 100,000 people had some form of the disorder.
But Lott said her specific subtype, involving a rare recessive gene inheritance pattern, exists in only 13 known cases internationally, according to a conversation she had with a genetics counselor at Emory University's genetics lab in 2016.
Now 46, Lott is a red-headed woman with bright blue eyes, elfin features, a warm smile and gentle voice. She also is confined to a wheelchair and unable to breathe without a ventilator, which beats a metronome-like staccato heard throughout her quiet Bossier City home.
Under a doctor’s directive, she requires 24-hour daily care from skilled nurses who can handle her medical needs, which include administering a minimum of four to six breathing treatments, operating coughing and lung suctioning machines at least six times daily, and doling out four to five different medications over every 24 hours.
Until recently, the majority of her care was provided by licensed practical nurses through a state-licensed home health agency and the state-funded New Opportunities Waiver program.
But in late August, Lott and her husband, Jeff Sadow, received a formal discharge letter in which the agency said it no longer could meet her needs. The couple spent several desperate weeks searching for other options, with Lott concerned that her services would stop and that she would die.
A glimmer of "true hope" came Thursday — four days before the scheduled end of Lott's services. A representative from the Office for Citizens with Developmental Disabilities called to say that a new home health agency had committed verbally to taking Lott's case and to beginning services Tuesday.
Details hadn't been finalized, Lott said. But she hopes that sharing her story can help others in a similar situation throughout the state.
"The one comfort I have had during this process is that my case and any attention it receives could help bring about some needed constructive reforms," Lott said. "Lives depend on it."
While Lott’s medical condition puts her at the extreme end of those seeking home-based health care, she is not alone.
As of June, more than 30,000 elderly or disabled Louisianians were on a waiting list to receive Medicaid-funded, home-based services instead of through a nursing home, according to The Advocate.
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She needs 24-hour nursing. Then she was told it would end