Culture contributor Courtney Ingle talks about the difference Make-a-Wish Mississippi makes in the lives of Mississippi’s children and how you can help.
When a parent learns that their child is going to be “medically complex,” his or her mind races to the future, “Will she ever walk?”
“Will he make it?”
“Will things ever be normal?”
These are all valid questions as uncertainty follows the lives of children with different medical needs. Make-A-Wish Mississippi wants to make one thing certain— that wishes can come true.
“Many people believe that Make-A-Wish grants that one true wish for only terminally ill children,” said Allison Tyler, CEO Make-A-Wish Mississippi. “But we focus on any critically ill child in the state. Research shows that having a wish granted is often a turning point in their treatment journey.”
Tyler said that the granted wishes often bring hope, motivation, and something to look forward to for the kids, but the impact doesn’t stop there. “These wishes aren’t just about the kids, they’re for the families too,” said Tyler. “In these situations, your whole world stops, not just for the critically ill child, but for their parents, siblings, grandparents. Having a wish granted changes their whole outlook.”
The Cook Family Wish
Megan Cook experienced this outlook shift for her family when her daughter’s wish was granted in December 2022. Merritt, her four-year old daughter, was diagnosed as an infant with Wolf-Hirschhorn’s syndrome, a rare genetic disorder that has a prevalence of about 1 in 50,000 births.
Merritt has experienced seizures, developmental delays, surgeries to repair a cleft palate, and she has a feeding tube. Traveling with a child is difficult enough, but for the Cook family, there’s even more to think about. “Merritt travels with a lot of equipment,” said Cook. “A feeding pump, IV pole, oxygen concentrator, portable oxygen tank, a ton of medications, a wheelchair, an activity seat, and a blood-oxygen saturation monitor, just to name a few.”
Merritt can sit up, but she does not walk or talk and is considered cognitively impaired. At first, Cook was hesitant about reaching out to Make-A-Wish. “I spoke with Merritt’s complex care doctor who urged me to complete the application,” Cook said. “I was hesitant initially because we have always felt that we are so fortunate to have such good social support and resources, but our doctor assured us that cases like Merrit’s are what Make-A-Wish is for.”
Since Merritt can’t make her wishes known, the wish was left to the discretion of her parents. They decided on a wish that would make it easier to provide family experiences and build positive memories with Merritt. “We felt like we would be able to travel with her with greater ease in a camper. Somewhere that we could load all of her things and they can stay there throughout a trip,” said Cook. “That was our ticket to travel safely and with less strain on us as a family so that Merritt can experience more.”
Their camper wish was granted in December and the Cook family took some “practice runs” camping in their driveway before their first big trip in March. “During spring break, we went to Paul B. Johnson state park and stayed for several days. It was fantastic. Merritt loved it. We visited the zoo and spent quality time together as a family outdoors.”
Bexlee-Kaye Harper Nash was diagnosed on November 23rd, 2019 with Stage 4 High Risk Neuroblastoma.
“It was a tumor on her left adrenal gland of her kidney, left side lymph node in her neck , and the bone marrow in her right hip and pelvis. Her prognosis at the very beginning was, if treatment was followed and completed, originally 80 to 85% survival,” said Brittany Irons, Bexlee’s mother. When a patient completes chemo, they get to ring a bell to celebrate the end of their treatment plan. For Bexlee, treatment was set to last 18 months.
“Her plan included frontline chemo, tumor resection, two stem cell transplants with high dose chemo, two weeks of radiation and six months of immunotherapy. She completed all of the treatment successfully and no disease was detected for six months prior to completing,” said Irons. “But her relapse was found on her final scans on May 21st, before she had a chance to ring the bell.”
Bexlee endured four more months of intense specialized treatment in Nashville before taking a turn for the worse. “It was found that her cancer had rapidly spread throughout her body, and the main tumor was pushing against her liver and entire biliary system shutting it down.”
At that point, Bexlee was deemed terminal. A social worker then reached out to Make-A-Wish on the family’s behalf to expedite the little girl’s wish to be a Disney princess. Bexlee made her wish earlier in her treatment, but COVID restrictions prevented the trip from happening. Make-a-Wish Mississippi made sure Bexlee got her wish. The family took Bexlee to Disney World. “She dressed like a princess every single day she got to see lots of princesses on the floats,” said Irons. “She even got to see Minnie Mouse, who was her favorite. We try to cherish all of the good memories despite our heartache of losing her.”
Wishes Take Many Forms
Make-A-Wish Mississippi doesn’t limit wishes to trips to Disney or campers. The organization does whatever it can to help grant the wishes of kids with terminal or critical illness. “I spoke at a Rotary Club event and a young man working in the kitchen there told me he received a computer he wished for at 13 years-old, and he’s 29 now,” said Tyler.
Wishes usually fall into one of four categories: a wish to have, a wish to go, a wish to meet or a wish to give.
“A wish to have would be something that would be given to make the child or family’s life easier or brighter,” said Tyler. “We have done bedroom renovations, given beach wheelchairs, or even provided generators so that families don’t have to be concerned about losing lights or access to their medical equipment in the event of an outage.”
The number one wish in the “to-go” category has always been to Disney world, but Tyler said some of the older kids wish for a different trip. “We had one child that just wanted to visit with family out-of-state,” said Tyler. “The family members were getting older, and travel for the family had not been accessible because of medical challenges.”
When a Make-A-Wish child wishes to meet a celebrity, Make-A-Wish does everything they can to make it happen, even if it is a virtual event. “John Cena is the most requested celebrity to meet, but we’ve had requests for online gamers and Snoop Dog as well,” said Tyler.
Some wishes, Tyler said, are requests to give back or pay it forward. Such is the case of Abraham Olegi, a 13-year-old who requested that Make-A-Wish help his community. “He missed serving with his church because of treatment, so his wish was to feed the hungry in Jackson, Mississippi every month for a year,” said Tyler. “He was featured on Good Morning America, and local news outlets as well.
You Can Make-A-Wish Come True
Make-A-Wish Mississippi aims to grant 129 wishes this year, and they’ll need your help to do it. “We do not receive any federal money to grant wishes,” said Tyler. “We rely on donations. We get very few donated dollars from the national chapter of Make-A-Wish, and those are donations that were made through businesses but specified by the donor to come to our branch.”
The wishes are granted for critically ill children from ages 2 1/2 to 18 and Make-A-Wish Mississippi does all the leg work to grant the wishes. If a child wishes to go to Disney World, the organization handles everything from allocating spending money to booking flights to buying park tickets. “We rely on partnerships on the local level for fundraising, but anyone can donate or volunteer,” said Tyler.
For more information on how to help Make-A-Wish Mississippi, visit wish.org/MS.