SARATOGA SPRINGS — On Aug. 25 residents of the Saratoga community are welcomed to help raise money for Kaitlin Bowman who has lost all mobility due to Late Infantile Neuronal Ceroid Lipofuscinoses (NCL). This is actually the 10th annual barbeque to support Bowman.
On Aug. 2 Bowman celebrated her 13th birthday. According to Becky Manning, Bowman’s mother, the life expectancy for those with Late Infantile NCL is eight to 12 years old.
“She had her first seizure two weeks before her third birthday. Before that she was totally average, a healthy kid and nothing was wrong. So she had her first seizure in 2008 and was diagnosed in 2009 and at her diagnosis they told me she wouldn’t live to see 10; and the medical books they say between eight and 12, so now being 13 my baby is officially not a statistic anymore,” Manning said.
“It feels amazing, makes me proud of her. She’s definitely following the path of the disease but she is making it her own and she’s doing so well... She has her days, her left hip is dislocated, just because she’s been in a wheel chair for so long so we have days where we deal with a decent amount of pain,” she added.
According to the National Health Institute, Late Infantile NCL refers to a group of conditions that affect the nervous system. Symptoms vary from person to person but include, vision impairment/loss, epilepsy and a decline in motor skills. Bowman also suffers Myoclonic jerk, which means she is constantly moving.
“Oh my gosh, there’s so much, there’s a lot of supplements that aren’t covered by insurance, just equipment that is comfort oriented. She’s gotten pretty skinny, so she needs like special pillows for pressure sores. We’ve been trying to get a wheelchair for her for a while but it just takes a long time through insurance. She does acupuncture and she gets massages and Reiki and none of that stuff is covered,” Manning said.
“She does those salt baths... She loves them, she gets so much relaxation out of it, I can just see the comfort on her face,” she added.
The event will take place at Saratoga Eagles Club located at 373 Crescent Ave. in Saratoga Springs. Attendees will be able to enjoy live music, a BBQ, raffles and more. Cost for adults is $20 and $5 for Children under 12. Money raised will go to help Bowman and her family afford what goes into caring for her. Saratoga Eagles Club and The Goat Brothers are sponsoring the event and according to Manning, there are hundreds of different raffles to be won. Small prizes like gift baskets and gift cards and larger prizes like diamond earrings and hotel stays. “Too many to count... It’s amazing how people have shown their love for her, people that haven’t even met her,” Manning says.
Bowman herself has also made an impact in the community and continues to make her mother proud- Kaitlin’s Korner at Gavin Park in the town of Wilton is an inclusive playground made for children of all abilities. Swings include bucket seats with buckles, a horizontal slide and all solid surfaces. While vacationing in Lake George, a family with an Autistic son thanked them for having built the playground.
“It’s so important to us that people continue to support her, I think its a huge part of why I’ve been able to give her the care that she needs outside of what insurance can cover cause it’s just the little things that aren’t a necessity have a huge impact on your quality of life... I do attribute a lot of her health to everybody helping me support her in the way that she needs so I just want to make sure everybody knows how thankful I am for that. I hope to see all their faces on Saturday,” Manning said.