‘Wish’ comes true for MS patient
Published 2:26 pm Saturday, March 20, 2010
AHOSKIE – At first glance, Aaliyah Boone appears as healthy as any 12-year-old child.
However, as it has been often said, looks can be deceiving.
Aaliyah, a 6th grade student at Ahoskie Elementary School, suffers from Multiple Sclerosis (MS), a disease that affects the ability of nerve cells in the brain and spinal cord to communicate with each other.
While there is no cure, MS patients, thanks to modern medicine, can survive…but there are complications to face such as total loss of motor skills, leading to a life confined to a wheelchair.
Beginning Sunday, Aaliyah will put those worries behind her for seven days as she and her family will enjoy an all-expense paid trip to Disney World, compliments of the Make-A-Wish Foundation of Eastern North Carolina.
For the Boone family, the trip will provide a break in their hectic schedules.
“We’re very excited…we can’t wait to get away as a family,” said Cheryl Boone, Aaliyah’s mother. “We live daily with Aaliyah’s disease. It affects us all.”
The Boones – dad, Alvin, mom, Aaliyah and her two brothers, 17-year-old Alvin Jr. and Akeem, age 14 – will board a commercial jet on Sunday and fly south to Florida. There, the family will enjoy the sights and sounds of Disney World, the Epcot Center, Universal Studios and Sea World.
Even their accommodations – a condominium complex known as “Give Kids the World” – are specially tailored to children suffering from critical illnesses.
While the excursion marks the first trip by air for the men in the Boone family, mother and daughter are frequent flyers. Every three months, Aaliyah and Mrs. Boone fly north to Buffalo, NY. Since July of last year, the two have paid three visits to the Jacobs Neurological MS Clinic/Women’s and Children’s Hospital in Buffalo.
“At the outset, the specialists in Buffalo wanted to see Aaliyah every three months,” Mrs. Boone said. “Then, during our January visit, they started Aaliyah on a new type of preventive medication. Now they want to wait six months before seeing her again to see how that medication is reacting with the MS.”
In 2008, Aaliyah begin to show troublesome symptoms. Mrs. Boone said her daughter was coming home from school nearly every day feeling fatigued. She also experienced headaches and lost her appetite.
“We were advised by our local doctor to watch her carefully for a month to see if the symptoms grew any worse,” Mrs. Boone said. “After that it was recommended that we take Aaliyah to a pediatric specialist in Greenville. They originally thought she was suffering from migraine headaches, but to be on the safe side they ordered an MRI.”
That medical scan bore bad news.
“The MRI showed lesions, black spots on her brain,” Mrs. Boone recalled. “They didn’t think it was MS at first; originally they thought it may be a disease that mimics MS.”
A follow-up MRI performed in June of 2008 confirmed the worst fear….MS. That test revealed additional lesions on the brain. A spinal tap ran concurrent to the MRI, confirming the fact that Aaliyah was suffering from MS, making her, at age 10, the youngest such patient in all of eastern North Carolina.
Three months after the diagnosis, a treatment program was launched. Coupled with steroids, Aaliyah received an injection three times a week for MS. Mrs. Boone was trained how to administer the injection at home.
Additionally, mother and daughter take a monthly trip to Greenville where Aaliyah receives a steroid infusion.
Despite this medical effort, MS was still progressing very rapidly in Aaliyah’s small frame. That led the family to seek a second opinion on treatment options.
“We were referred to John Hopkins (a world-renowned medical research facility in Baltimore, Maryland),” Mrs. Boone said. “They were aware of how progressive MS was in Aaliyah, but because of their scheduling they couldn’t see her immediately so they recommended she go to an MS hospital, which we now do in Buffalo.”
Now, the Boone family is simply living day-to-day, knowing there is no cure for MS. Despite that fact, the family remains positive and upbeat.
“It’s not like cancer where it will kill you…it’s a disease you have to live with,” Mrs. Boone noted. “As for right now, Aaliyah is walking okay, but MS cuts into the nerve fibers that will cause you to lose all motor skills. She could end-up in a wheelchair. MS also affects your thinking process.”
Due to her weakened immune system, Aaliyah is currently homebound in order to avoid the flu season at school.
“She understands what she has and what she is going through,” Mrs. Boone said of her only daughter. “Sometimes she gets withdrawn; she has good days and bad days, but all in all she remains in fairly good spirits.”
Dreaming of ‘Mickey’
Like most youngsters, Aaliyah dreams of the world beyond her Ahoskie home. One of those dreams is to visit Disney World.
“A while back, a friend told me about the Make-A-Wish Foundation,” Mrs. Boone recalled. “My friend went as far as to contact them, and, in turn, Make-A-Wish contacted me.”
Founded in 1980 in Phoenix, Arizona, the Make-A-Wish Foundation has, since its inception, granted the wishes of more than 188,000 children nationwide with life-threatening medical conditions. Last year the Foundation granted 13,465 wishes, the most ever in its then 29-year history. The most popular wish is to visit a theme park, which accounts for more than 40 percent of the requests from its wish kids.
“They got the ball rolling for us late last year,” Mrs. Boone said. “In order to confirm a life-threatening illness, they send paperwork to the doctors who then send them back to the Foundation. That’s what happened in our case.
“They met with me in January to let me know Aaliyah’s wish had been granted,” she continued. “Her wish all along was to go to Disney World. We chose to go in March because Aaliyah cannot stand the heat.”
“We’re thrilled we could make this happen for the Boone family,” said Rose McHale of the Make-A-Wish Foundation of Eastern North Carolina. “They are a sweet and loving family who are pulling together despite facing a long, uncertain and difficult road. At least for one week, they can put all of that behind them and enjoy a fun-filled vacation at Disney World.”
On Thursday morning, McHale was joined by fellow “wish-granter” Janice Lane inside Aaliyah’s sixth grade classroom at Ahoskie Elementary School where the official presentation was made to the Boone family.
The Foundation supplied pizza, cake and juice to every student in April Blackwell’s class. Additionally, McHale presented Aaliyah with a few “traveling gifts” – a pair of pink flip flops, an MP3 player and disposable cameras.
In between remarks made by Ahoskie Elementary School Principal Stan Warren and Hertford County Schools Superintendent Dr. John Fahey, representatives from Perdue Farms, Inc. made a special presentation. On behalf of Perdue’s workers at the Lewiston Processing Plant (where Mr. Boone is employed), a monetary gift to be used for their trip was given to the family by Eunice Riddick, Brenda Taylor and Sandra Hardy. The Perdue trio also gave gifts (calculators) to each student in Blackwell’s class.
“To Make-A-Wish, thank you for all the wonderful things you do for so many families,” Mrs. Boone closed. “Thank you for thinking of our family in this special way…you made our wish come true.”