Enfield Girl Granted Special Equipment Through Make-A-Wish

ENFIELD, CT — When the term Make-A-Wish is used, most people automatically think of the high-profile wishes often granted to terminally ill children, like trips to Disney World, meeting John Cena or Derek Jeter, or attending the NBA All-Star Game. However, the charitable organization often grants wishes that assist children and their families with everyday life. Such was the case for an Enfield family at a wish party Sunday at the Roaring Brook Co-operative Campground in Stafford.

Joanna Gardner, better known as JoJo, is an 11-year-old who has Rett Syndrome, a rare genetic neurological disorder which occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat and even breathe easily. She was diagnosed with the disorder when she was about 2, according to her grandfather, Tim Desjardin.

"Until she was about 2, she appeared to be a healthy little girl," Desjardin said. "She lost her ability to talk, and is no longer able to speak."

Due to dysphagia, the inability to swallow, JoJo is fed through a gastrostomy tube, which brings nutrition directly to the stomach. When she was 8, a respiratory problem necessitated use of a ventilator at Connecticut Children's Medical Center for several weeks, and the family faced genuine concern that "she may not make it past her ninth or 10th birthday," Desjardin said. Make-A-Wish Connecticut got involved at that point.

"JoJo's wish started about two and a half years ago, and it finally came to fruition about six or seven months ago," said Make-A-Wish volunteer wish grantor Paula Musgrave. "We met with her family, and it was decided it would be best to get her some equipment so she can be outdoors."

JoJo's mother, Brieanna Minor, and stepmother, Emily Desjardin, together with grandparents Tim and Laurie Desjardin, worked with Musgrave and Make-A-Wish volunteer Lauren Wysocki to acquire two items to assist them with JoJo's care. On Sunday, the items were delivered to the campground: a car seat with an integrated positioning system, and a stroller known as an Adaptive Star Axiom Improv Mobility Push Chair.

"Those items are very expensive, but were needed with JoJo getting to adult size," Desjardin said. "Make-A-Wish really came through. JoJo will be able to use this for the rest of her life."

Desjardin said medications have helped his granddaughter slow the effects of daytime apnea, "with oxygen available during the day if she's having trouble." JoJo was also recently diagnosed with sleep apnea, and is now using oxygen while she sleeps.

"She just had her 11th birthday, and she's doing fantastic now," Desjardin said, adding his granddaughter is now attending Eli Whitney Elementary School.

At the wish party, Wysocki said, "Every wish is special, but this one is close to the heart. It's a different kind of love, and it's great."

"When we're dealing with kids who are non-communicative, we rely a lot on the family, and this family has been such a joy for me," Musgrave added. "You can tell they all love her so much, and they're all going to share in what Make-A-Wish was able to do for them."

Make-A-Wish Connecticut grants over 200 wishes each year – each one a life-affirming testament to hope, inspiration, and resilience. Wishes strengthen wish kids and their families, rally communities together, and change the lives of everyone involved. Make-A-Wish Connecticut has granted over 2,500 wishes since its inception in 1986.