There’s a time in every person’s life when there’s no other choice than to ask for help. For the Hester family, that time is now.
According to Southside Baptist Church Pastor Jeff Martin, Tim and Patches Hester have been long-time members of the church. He said the couple never hesitates to join in and help out with church events and fundraisers. But now, they need help for their son, Jesse. He said that’s why the church decided to start “June for Jesse,” where the goal would be to have different fundraisers during the month of June to help raise money for a handicap accessible van for the Hester family.
Jesse was born in March of 2007, and Tim said he was so large at birth that he broke the hospital’s record. He weighed 12 pounds, 12 ounces and was 21.5 inches long. But at his four-month checkup, his parents and doctor noticed he wasn’t meeting some of the typical milestones for his age. When he was eight months old he was sent to a
genetics specialist where he was diagnosed with a rare syndrome called Pallister-Killian mosaic syndrome (PKS).
According to the National Center for Advancing Translational Sciences website, PKS is “a multi-system disorder that is characterized by extremely weak muscle tone in infancy and early childhood, intellectual disability, distinctive facial features, sparse hair, areas of unusual skin coloring and other birth defects. The signs and symptoms of PKS can vary, although most documented cases of people with the syndrome have severe to profound intellectual disability and other serious health problems.” The website stated PKS is usually caused by the presence of an abnormal extra chromosome 12 called isochromosome 12p, but other, more complex chromosomal changes involving chromosome 12 are responsible for the disorder in rare cases. PKS happens randomly and for no known reason, and there are under 200 diagnosed cases of PKS in the world, according to pkskids.net.
Jesse is wheelchair bound, non-verbal and requires complete assistance, according to Patches. His parents and his two brothers, Levi and Luke, do everything they can to make sure Jesse gets to go with them everywhere. She said now that Jesse is 12 years old and weighs 75 pounds, it’s more difficult to get him in and out of the family’s van. She said since they are “older parents,” an injury from lifting Jesse has become a greater concern.
“The vans now can make [traveling] so much better,” Patches said. “It would make it where Jesse can sit right in the middle and participate. So, he’s more included with the family. Plus, [the van] will help make it easier when dropping him off at school.”
Since including Jesse is the Hester family’s top priority, Southside Baptist Church is working to help them buy a van with better handicap capabilities. According to estimates, the van could cost anywhere from $27,000 to $45,000.
“It would provide us a different way of living, if we had that kind of van,” Patches said. “Jesse isn’t the only child that needs this type of help. I’m hoping that other people will see that there’s ways that you can be out there talking to the community and not be afraid.”
Martin said the church helped raise money for Jesse with its vacation Bible school, and they’re holding a “rain or shine” yard sale and car wash on Saturday. The church also has official “Proud to be a friend of Jesse” T-shirts for sale to help raise funds for the van. He said the shirts cost $20 each, and they’re taking orders for them at the church, located at 305 W Sims Avenue in Albertville, or by calling the church office at 256-878-4293.
Another way to help the Hester family get Jesse the van he needs is by eating at Zaxby’s on June 26, from 5-8 p.m. Zaxby’s in Albertville will donate a percentage of its sales to help Jesse. Also, Patches said there’s a bank account set up at the Citizens Bank & Trust in Albertville where donations could be made to help Jesse.
“We would be completely appreciative of anything that anybody could do,” Patches said. “It would definitely make a difference in our lives. We would be truly appreciative to whatever anybody could do to help. And, put a spotlight on this community. Because just in Jesse’s class alone, there are five children [that are in wheelchairs.] A lot of people don’t know where to go and what to do, so hopefully this will provide an opportunity for others to be able to ask for more information.”
Patches said the Huntsville Children Rehab Service would be a good source for anyone needing help with special needs children.