3-year-old with rare disorder receives therapy poolBy Staff Reports Published 4:30pm Tuesday, March 25, 2014
Without saying a word, 3-year-old Jacob Jones has captured the hearts of many in his small town of Thorsby.
Jacob was born with an extremely rare, inherited neurologic disorder called Tay-Sachs. He was greeted by dozens of relatives, friends and members of the Cedar Grove Fire Department on Saturday, all celebrating Jacob’s wish come true.
“Each day we just kind of live to its fullest,” said Jacob’s mother, Erica Jones. “Each day I see a smile and I see him relaxed and comfortable is a good day.”
And Saturday, Jacob was all smiles.
Make-A-Wish Alabama, All Star Pool and Spa, Supreme Electric, American Concrete Foundations and Wall, Crane Works and Alabama Teen Challenge teamed up to grant Jacob’s wish of getting his own therapy pool. The heated swim spa measures at 12 feet long, 7 feet wide and more than 4 feet tall.
Jacob’s family said the therapy pool will make things much easier for them. Until recently, they had to travel Interstate 65 North to the Lakeshore Foundation to get Jacob some swim time.
“With us not having to get in the car and move him around…he can enjoy it,” Erica Jones said. “No matter what kind of day, we can get him out here and he can just relax.”
Jacob’s condition causes his nervous system to deteriorate, and swimming allows Jacob to stay active and helps his body curb his condition.
Jacob’s condition is all too familiar with Cedar Grove Fire Chief Adam Price, who says his department has made several visits to the Jones’ home, responding to medical emergency calls.
“We’ve run several calls on him out here,” Price said. “We try to help any way we can.”
“They’ve seen Jacob at his worst,” Jones added. “They’ve seen me cry; they’ve seen me scream. They’ve seen the hard days.”
Jacob has daily seizures and is wheelchair dependent. He is constantly hooked up to a suction machine and feeding machine, which help him live as normal a life as possible and give him “good days.”
Saturday was a good day.
Festive balloons could be seen all over the Jones’ home, swaying with the late morning breeze. Some were even tied to Jacob’s new spa. A beautifully decorated fish-themed cake almost looked too good to eat.
It was, by definition, the epitome of a celebration.
“They are a great family,” Price said. “They went beyond what most families would do, for Jacob, and it’s just a blessing to be able to be here and celebrate with them.”
No treatments. No hospital beds. No emergency visits from the local fire department. But, rather, about 50 of Jacob’s closest friends and family members who have all been touched by this toddler’s incredible strength, courage and unparalleled determination to live.
“I’m extremely proud of him,” Erica Jones said. “It’s made me honored, extremely honored to be his mom. He inspires me to do my best. That’s what he deserves.”