SMA recently had the opportunity to speak with Pam Jones, President and CEO of Make-A-Wish® Alabama, and Sarah Hall, Volunteer Manager of Make-A-Wish Alabama. Make-A-Wish America is a national nonprofit organization whose mission is to “…grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.” In 1980, when 7-year-old Chris Greicius was suffering from leukemia, no one knew the impact he would have as the Arizona Department of Public Safety came together to make Chris’ lifelong dream of being a policeman and “catch bad guys” a reality. Chris lost his battle with leukemia shortly after his wish came true but his legacy lived on and was the beginning of the organization that in 2012 alone granted nearly 14,000 wishes.
“A normal family going through extraordinary circumstances” – that is how Make-A-Wish sees the families it serves. When the organization was incorporated in 1983, it was established to provide wishes for children suffering terminal illnesses such as cancer, but as more of those illnesses have fortunately become more treatable, the organization revised its criteria to include progressive, degenerative, or malignant life-threatening conditions that currently place the child’s life in, and Ms. Jones stresses the goal of Make-A-Wish is to ensure all wish children have the experience of a lifetime. “We don’t want any family or any child to feel overshadowed or that their medical condition isn’t as serious because if the child falls into the category of receiving a wish from Make-A-Wish, she has a chronically life-threatening medical condition and that, in its own way, is something severe for the child and family to deal with.”
Regardless of the child’s condition, Make-A-Wishis always mindful of what the entire family is experiencing. “What I try to remember in what we do every single day is that nobody that we serve ever expected to be in the position that they’re in,” said Ms. Jones. “Life was as normal and then they got that diagnosis and it’s the situation that you never hope you have to face.” As families face a child’s illness, the siblings are affected as well; the nature of the illness requires parents to devote their attention to the ill child, and as a result, his brothers and sisters may not receive as much of the parents’ time. “Siblings take it hard and you think, ‘Well, that little 8-year-old boy having chemotherapy treatment should not have to have that,’” she continued, “But his 12-year-old brother shouldn’t know the experiences of realizing his brother is so sick.”
What is a Wish?
As Ms. Hall explained, Make-A-Wish offers a wish child the opportunity to experience a wish from several categories: “To Go” to, for example, Walt Disney World® Resort, “To Be” a police officer, “To Have” a backyard playground, and “To Meet” John Cena. In addition, there is the newer “Wish to Give” category in which children choose to use their wish opportunity to give back in some way such providing assistance to abandoned and abused animals. “Give back wishes are great,” said Ms. Hall. “Those are the wishes that have the great ‘why’s’ – the ‘why’ behind why they want that particular wish.” That is not to say that wishes in the other categories aren’t just as wonderful and special. “When you talk to the kids who want things in other categories, you get to see their face just light up,” Ms. Hall added. “It’s the one thing that has just gotten them through the next chemo treatment, radiation, or needle poke and is just that one thought that has gotten them through.”
The Impact of a Wish
To the children, a wish may be the fulfillment of a lifelong dream to visit Los Angeles or meet their favorite celebrities, but in actuality, it is so much more than a wonderful getaway to a dreamed-of location. “A wish just isn’t a vacation,” Ms. Hall said. “It’s a life-affirming opportunity for not only the wish child, but also the family and people they impact. No matter the outcome or the ultimate end, they will have wonderful memories they can take with them wherever they go.” And making these memories helps bring the families together at time when marriages are often put on hold and parents don’t have the opportunity to be a part of their other children’s events because they have been at the hospital. “A wish reunites a family and it strengthens families at a time when they’re broken by circumstances beyond their control,” added Ms. Jones. “They didn’t ask for it, they weren’t expecting it, and all of a sudden, it’s been thrust upon them and they just deal with it and it’s not easy. This allows them – parents, spouses, siblings – to bond and come together, away from the hospital and doctors, away from the needles and focus on life and having fun again.”
Often defined as “a nice thing” or “the happy part” of what the family is experiencing, a wish is that and more, as proven by the organization’s 2011 Wish Impact Study, in which children who have received wishes, parents, volunteers, and medical professionals were interviewed to discuss the impact of a wish. “No child or family should face what they’re facing and if we get to say to a child, ‘Dream big’, I think that is a tremendous because it is definitely a sweet thing” Ms. Jones said. “However, this is why this wish impact study was done; to not only say we are nice thing, but it’s also a necessary thing because it does play into their positive prognosis and doctors have seen a change in their patients.” Children who were despondent due to such things as not being able to attend school, gaining weight due to steroids, or losing their hair due to treatment often improve when they have something to look forward to. “Doctors have reported that yes, they do see a change in the prognosis of a child,” Ms. Jones noted. “[A wish] makes them more determined, more focused” , as was evidenced in the Wish Impact Study -- a combined 89% of doctors, nurses and health professionals who were surveyed said they believe a wish experience can influence the wish child’s physical health.
To further highlight the positive effect wishes can have on children and their families, both Ms. Jones and Ms. Hall referred to the “Arc of a Journey,” a presentation given at the Make-A-Wish national conference that visually details the finds of the Wish Impact Study. “It’s natural to think when you get this diagnosis, everything becomes depressed,” Ms. Jones noted. “But then, the child who is not getting a wish is still progressing along [one line] and then you see the spike indicating a child received a wish. It’s a really wonderful thing to see.”
Physician involvement is of utmost importance to Make-A-Wish; each chapter has at least one medical advisor, with the national organization having a chief medical advisor, Dr. Jonathan Stein, MD, FAAP, who evaluates the charity’s criteria, as well as looks to the future and assesses what issues may be on the horizon. “We work very closely with the physicians,” Ms. Jones explained. “On the national level and on the local level, we are constantly in touch with the physicians because they are the first responders and we rely on them to advise us on what we should do, what the child can do, and we work together to make this a reality for the families.”
Working with the physicians in two phases, Make-A-Wish asks them to first corroborate the child’s medical condition and then follows up with them to determine if the child’s chosen wish will have any negative effect on his or her health. “We want to make sure the child is able to enjoy the wish,” Ms. Jones said. “The doctors have this regimen of treatment to get the child healthy again and we don’t want to work in contrast to that. We don’t ever want to do anything that is going to jeopardize the child’s medical condition more than it is already compromised.”
In addition to close collaboration with the physicians, Make-A-Wish also relies heavily on its volunteers. With 25,000 volunteers in the organization’s 61 chapters across the United States, Ms. Jones realizes what an integral role they play. “We could not do what we do without our volunteers,” she said. “We want our families to have this full, rich experience and if they see us on the day of the shopping spree, for example, that’s not what we want and why volunteers are integral to our success.”
When it comes to making a child’s dream come true, Make-A-Wish understands everything families have faced and strives to provide opportunities for those lasting moments and memories. “From those extraordinary circumstances come unbelievable levels of courage and we see that in our children,” Ms. Jones said. “Our goal is to fulfill that one true heartfelt wish, and yes, it may be costly, but if that’s what the child wants to do, we’ve got to find a way to do it, absolutely have to find a way.”
All photos are courtesy of Make-A-Wish® Alabama.
Photo 1: Jada wished to have an Alabama Crimson Tide® room redo.
Photo 2: Janelle wished to meet Cinderella and Prince Charming.
Photo 3: Annika wished to give to a shelter for abandoned and abused animals.
Photo 4: Patrick wished to have an outdoor swing set.