LAKEWOOD – Local families affected by Lennox-Gastro Syndrome (LGS) will host a fundraiser this week at Panera Bread to help further lifesaving research to find a cure for the disease.
On Monday, WNYNewsNow spoke with LGS Ambassador Darla Davison whose son Aaron suffers from the severe seizures related to the disease. Davison said that in most cases doctors still don’t know what causes the Syndrome.
“It could be from an injury or illness, it could be something genetic or a mutated gene, and in most cases they don’t figure out a cause,” explained Davison. “Research is very exciting right now in the LGS Community because they (scientists) are finding certain commonalities that are causing it.”
Davison said that her son Aaron was first diagnosed at two-and-a-half years old after he had his first of many seizures.
“Before that he was a completely healthy, typical, meeting all his milestones, bright toddler,” said Davison. “We were never given a cause or a reason why he had his first seizure and why that continued to develop into LGS.”
Since New York State recently legalized medical marijuana, Davison said Aaron’s condition has drastically improved.
“He was less social and he was having more seizures so he was sleepy during the day,” said Davison. “After adding the cannabis oil and adjusting some of his pharmaceutical meds, he is notably a different young man; more outgoing, more social, more interactive. People continue to tell us they can’t believe how different he is.”
In the next few weeks Aaron, now 30, should be able to pick up the medication at his local pharmacy. Currently, the company offering the meds is paying the full cost of the drugs until it is available locally.
Davison is fighting not only for more funding for research but also to break down stigmas associated with medical marijuana.
“The cannabis product that these children are taking is safe, not harmful, it’s been tested and it is very helpful,” explained Davison. “We need to remove the stigma of Medical Marijuana that children are smoking pot or anything along those lines. It is actually an oil.”
Thursday is International LGS Awareness Day, and that’s when local LGS Families will host a fundraiser at the Lakewood Panera Bread.
Customers interested in helping donate a portion of their meal charge to the LGS Foundation should show this flyer when ordering.
Davison and a few other families whose children are affected by the condition will be at Panera Thursday. They encourage any other families affected by LGS to stop down as well.