Wish Granted: Make-A-Wish fulfills local child’s dream
Published 7:00 am Saturday, June 25, 2016
“A dream is a wish your heart makes.” –– from Disney’s Cinderella.
Next week, 11-year-old Daeseania Mackel will celebrate her 12th birthday in the “happiest place on Earth,” Walt Disney World.
Her magical trip will be made possible by Make-A-Wish Mississippi, an organization that fulfills the dreams of children with life-threatening medical conditions.
Wednesday, the family celebrated with a send off party made possible by the staff at The Teddy Bear House Museum in Picayune.
Prior to September 2012, Daeseania was a seemingly healthy 8-year-old child.
“She would always fight with her brothers,” her mother Shimeka Mackel said. “She loved to get on her laptop, sing, talk to herself, and our dog.”
On September 9, 2012, Daeseania went for a swim and in the days following, developed an unexplained fever, her mother said. The family administered medicine to bring it down.
However, one night, as she was sleeping, Daeseania suffered an unknown amount of seizures.
“When I went into her room, she was laid there stiff as a board,” Shimeka said. “We took her to the hospital.”
At that point, Shimeka said Daeseania could still communicate with her by blinking her eyes and squeezing her mom’s hand.
However, once they got to the local hospital, Daeseania suffered more seizures and was immediately prepared for transport to a medical facility in Jackson. During transport, Daeseania suffered a prolonged seizure, which damaged her thalamus, a part of the brain that plays a role in controlling the body’s motor system, leaving Daeseania unable to walk or talk, her mother said.
It wasn’t until November of 2014 that the Mackel family was given a name for Daeseania’s condition.
Leigh’s Syndrome is a mitochondrial disease, her mother said.
“Her body doesn’t produce energy,” Shimeka said. “We were told that children usually are diagnosed with this at birth and don’t make it past 1 or 2-years-old. When we found out, we were told that she was one of two children in the world to survive. It may have been lying dormant all this time and a virus may have brought it on.”
For the most part, prior to 2013, Daeseania appeared healthy. But her mother said, she may have experienced symptoms of Leigh’s Syndrome.
“Sometimes her legs would give out and stiffen,” she said. “She would go to the refrigerator and inhale food and juice. Her body craved it to produce energy.”
During her two-week hospital stay, Shimeka said her daughter was almost comatose. Her lungs collapsed and doctors inserted a tracheal and feeding tube, her mother said.
“It was devastating, I thought I would lose her,” Shimeka said. “But, after about a month, her body had healed enough to where she didn’t need the tracheal tube anymore.”
Since then, the family has learned to adjust to Daeseania’s illness. She is unable to be around people who are ill and attends speech and occupational therapy two times per week. She also has a gait trainer.
Even thought she can’t verbalize her needs, Daeseania blinks her eyes for “yes” and makes a grunting noise to say “no”, her mother said.
At times she can feed herself, but her mother said she has problems grabbing food and bringing it straight to her mouth.
There is no cure for Leigh’s syndrome and if she suffers another major seizure, Daeseania could die, her mother said.
However, her mother is hopeful her daughter will walk and talk again.
“She’s motivated to get back to her life,” she said. “She’s a girly-girl/tomboy who loves to wear dresses, bracelets and ride 4-wheelers. She also enjoys getting her hair and nails done. She’s also real bossy.”
Her mother’s final comment caused her daughter to break out into a wide grin followed by laughter.
When one of Daeseania’s teachers mentioned the Make-A-Wish organization, Shimaka said she didn’t think her daughter’s wish would be granted.
However, in October of 2015, she met with Make-A-Wish Mississippi volunteer Brittany Richards from Picayune, who is also a Make-A-Wish recipient.
Richards has sickle cell disease, which means her blood cells are sickle-shaped. Originally, doctors told Richards she wouldn’t live a long life.
“I’m now 25 and have been volunteering for the past three years,” she said. “When I was granted my wish, I knew I wanted to be the girl who gives the good news. It makes me feel like it’s my wish all over again.”
As a wish granter, Richards meets with families and delivers the news. However, this was her first time to throw a send off party.
“It’s heartwarming and emotional,” she said. “Daeseania is a sweet girl and I love her to pieces.”
Along with throwing the send off party, Richards also gave Daeseania a tote bag with Minnie Mouse ears, an autograph book and many other items to enhance her trip.
The family will also receive a Visa card to pay for their expenses in Disney World.
“Daeseania has always harassed me about Disney,” her mother said. “It was her first choice and that’s all she wanted. This trip means a lot. I want her to enjoy her life.”
According to Make-A-Wish Mississippi’s website, the organization was founded in 1984 in memory of a young girl from Gulfport. After she was diagnosed with a terminal illness, a group of people raised funds to send her, her mother and grandmother to Walt Disney World.
Since its founding, the Mississippi chapter of Make-A-Wish has granted the wishes of 1,700 kids and averages 100 wishes per year.
Learn more about Make-A-Wish Mississippi at www.ms.wish.org.