RARE Daily

The Making of A Rare Parent

February 3, 2021

No one asks to be the parent of a child with complex medical conditions, or so I thought. But Joslynn Jones McLaughlin did just that. And not once, but four times.

McLaughlin’s husband was heading to Afghanistan for a contract assignment in 2012 when she decided to take a job teaching English to students getting business degrees at a small college in the southern province of Guangdong, China with her 12-year-old son in tow. In preparation for moving to China, she read several memoirs to learn about the country before she left and was taken with the orphan crisis there.

She was determined to visit an orphanage when she arrived in China, thinking that she might be able to start a nonprofit, or help bring in needed supplies. On her first visit to an orphanage in Guandgong, she met a 16-month-old girl she called Laila who soon consumed her every thought.

The orphanage told McLauglin the child had cerebral palsy. She was limp and malnourished. Though the staff tried to do their best, the orphanage was poor and understaffed. It had no heat or air conditioning. There were no vegetables, eggs, and all the kids ate was rice and formula for the babies. There were about 30 children there, but Laila seemed different.

“Most of them were honestly pretty severely mentally handicapped in some way or another. And most of them seemed pretty happy with their circumstances, or unable to process their circumstances,” said McLaughlin. “She was not like that. She was so sad and very aware, highly alert, and she knew what a terrible situation she was in. That really captured my heart.”

After 22 months of petitioning the Chinese government, McLaughlin and her husband adopted Laila and brought her back to the United States. They suspected she suffered from a more serious illness and she was soon diagnosed with spinal muscular atrophy type 2, a progressive genetic neuromuscular disorder.  The couple was soon attending their first SMA conference and within nine months of her diagnosis, Laila was enrolled in the first clinical trial for what became the SMA drug Spinraza.

Because Laila was severely disabled, the McLaughlins were eligible to adopt a second child through the same orphanage at the same time. They decided that they wouldn’t have the financial wherewithal to go through the process again in the future and decided they would adopt a second child. They didn’t meet the girl, Charlet, who is a year younger than Laila, until the day they adopted her. She had spina bifida, a neural tube defect that can carry physical and intellectual disabilities.

Charlet has full use of her legs. She has some significant learning issues, but she is considered high functioning.

McLaughlin didn’t seek out the next adoption, a seven-year-old girl named Maizey from China with SMA type 2. The U.S. family that had adopted her didn’t know she had SMA type 2 and they were ill-prepared to give her the care she needed. She had a G-tube for feeding and was basically left in bed. When told of the situation, the McLaughlin’s added Maizey to their growing brood.

“I’m very open to adoption. I would adopt a hundred more if I thought that I could care for everybody properly, but I couldn’t,” said McLaughlin. “Once you’ve seen and experienced what I did, it’s hard to just walk away from that.”  

Finally, came Willow, a 13-year-old girl from China. McLaughlin wanted to continue to adopt from China, but she knew she couldn’t take on the most medically complex children. Willow, who has cerebral palsy, was about to age out of the orphanage at age 14 and was without prospects.

She is high functioning and has a speech impairment. She taught herself to walk at age 8.

When McLaughlin left China, she was readying to enter a doctoral program in planning, design, and the built environment at Clemson University. She said she intended to do it all, but only lasted a semester, with the two girls at the time and numerous doctor appointments, problems getting the schools up to snuff, and handling the levels of care the girls needed.

Now in Anderson, South Carolina, about 225 miles northwest of Charlotte, they live in a house with wide enough doors to accommodate two wheelchairs. Though McLaughlin and her husband have since separated, he continues to support the household and remains involved with the children.

I’ve met many remarkable parents who have raised children born with severe, rare diseases and seen how through love, will, and grace they’ve turned their lives upside down to give their children the best lives they can. My sense is that in many cases the experience has not only tested their humanity but nurtured it. Others, though, may just come wired that way.

“This is not the path that I thought I would take. I was seeking title and affluence and travel and a name for myself and my world got flipped upside down,” said McLaughlin. “I wouldn’t change it for a moment.”


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