Brilyn Robinson, a 9-year-old boy of Portsmouth, who was diagnosed with Duchenne muscular dystrophy (DMD) disease will get his ‘Wish’ — a trip to Disney World with his entire family, compliments of the Make-A-Wish Foundation, Ohio, Kentucky and Indiana Chapter.
Nicole Toombs, marketing and communications manager of the Make-A-Wish Foundation Ohio, Kentucky and Indiana Chapter, said the Robinson family trip will be in early 2017.
“We are working on granting that wish for the Robinson family,” Toombs said. “It looks they are slated to go either in January or March of 2017. It is priceless for us. It allows the families to reconnect and recharge and gives the kids hope, and restores their fighting spirit. Doctors tell us that the gift is priceless medicine for the kids. It gives them distraction from the hospitals, and doctors, and treatments that they are receiving, and allows them to feel like a normal kid and family again.”
Trips such as the one the Robinson’s will experience typically cost thousands of dollars, Toombs said.
“It is a six night, seven day trip to Disney World in Orlando, Florida. The average cost for a Wish is $8,000. The family will get picked up and taken to the airport by a limousine, and picked up and returned home by a limo too, so they don’t have to worry about anything. It is all planned out for them,” Toombs said.
In addition to fun and amusement at the Disney World theme park, Toombs said Brilyn and his family will also be lavished with gifts, festivities and excitement on site during their stay at Give Kids the World.
“The Robinson family will stay at a place called, Give Kids the World Village, which is actually in Kissimmee, Florida. Give Kids the World is a non-profit as well, and they host all Wish families from all the Wish organizations, that is the only way that you can stay on that property,” Toombs said. “Basically, it is like its own little park, in and of itself. It is all geared toward the kids, they can get ice cream 24, seven and there’s a movie theater on property, and every night there is a different theme. They will have a Christmas night where Santa is there and they will receive presents, and there will be parades. It is just it’s own little village. The families usually come back and say that it is one of their favorite parts of the trip, and that’s something that they couldn’t get without going through Make-A-Wish. It is a really neat place, also pretty magical.”
William Robinson, the father of Brilyn Robinson, said his son Brilyn has been battling DMD for five years.
“My son Brilyn has Duchenne muscular dystrophy, which is a deadly form of muscular dystrophy, the most deadliest form, and it is a progressive muscular disease,” Robinson said “He was diagnosed for about five years ago. It is a disease that usually takes a child’s ability to walk between the ages of nine and 12.”“The hardest thing about being Brilyn’s father is seeing how he has to miss out on things that other kids get to do.”
Robinson said Brilyn’s ‘Wish’ trip is sure to draw their family closer together.
“To see a smile on Brilyn’s face means the world to me, and as the disease progresses, just the fact that for six days and seven nights he will not have to worry about anything means so much to us. And he will be surrounded by other children that have equal, or even greater battles as Brilyn does will allow him to be in a place where he belongs more,” Robinson said. “My other children will also get an opportunity to see other kids, not just their brother who they feel responsible for with all of the help that they have to give. So, hopefully they can see other children, and that will help to open their hearts and souls, and then everybody can come away humbled, and blessed, and value our time together even more as we battle the latter stages of his disease.”
More families are waiting have their Wishes honored by Make-A-Wish, according to Toombs.
“There are 200 kids waiting for their ‘Wishes’ who qualify in Central Ohio, and are in the planning process. Here in Central Ohio we granted about 2,200 Wishes, since the Make-A-Wish’s inception.,” Toombs said. “As a Chapter in three states we have granted over 15,000 Wishes to qualifying families. last year the Make-A-Wish Ohio, Kentucky and Indiana Chapter granted 118 Wishes just here in Central Ohio.”
Robinson said he and his family deeply appreciation Make-A-Wish for making such a glorious trip possible for his son and family. Additionally, Robinson said they also appreciate the local Make-A-Wish local volunteers in Portsmouth, husband and wife team, Wes and Kellie Cline who have help tremendously in helping to bring Brilyn’s Wish into fruition.
For more information Make-A-Wish Ohio, Kentucky and Indiana visit: http://oki.wish.org/
Reach Portia Williams at 740-464-3862, or on Twitter @PortiaWillPDT.