Santa Barbara resident cares for her son, who has LGS, and works with foundation
Long before COVID-19 ravaged the world, Santa Barbara resident Jen Griffin knew what isolation felt like.
In fact, anyone with the rare disease Lennox-Gastaut Syndrome, or any caregiver of someone with this disease, knows the loneliness of isolation.
Ms. Griffin is not only a caregiver for her 20-year-old son Theo, who has LSG, but also serves as the director of family support at The Lennox-Gastaut Syndrome Foundation.
LGS is a “severe epilepsy which develops in early childhood and is characterized by more than one seizure type … In my son’s case, he started his kind of a classic LGS story of infantile spasms at 3 months old,” Ms. Griffin told the News-Press.
“No one is born with LGS,” she continued. “Some have a genetic cause or mutation.
“Some have a birth injury or brain injury,” she said. “Genetic mutations count for a large percentage of seizures. The cause is unknown for 10% of cases.
“A lot of people are finally finding out why their kids have seizures. A large percentage is due to genetics, which is revealed by genetic testing,” Ms. Griffin explained. “With my son, there is no known cause. Everything structurally looks normal in his MRI. Those with LGS can experience hundreds of seizures a day.”
The LGS Foundation was recently one of 30 advocacy organizations awarded a grant from Horizon Therapeutics’ inaugural #RAREis Global Advocate Grant, a new program designed to support the rare disease community by providing $5,000 grants to U.S. and global patient advocacy groups working to advance, educate and address the needs of the community. These funds will go toward supporting the LGS Foundation’s training for their ambassadors.
The LGS Foundation has almost 45 ambassadors across the country, who help onboard new families to the organization. With this grant, the LGS Foundation plans to bring all their ambassadors together in August for critical tool and resource training and strategy building.
“The LGS Foundation’s Ambassadors and Patient Navigators gathered in Orlando, Fla., on Aug. 13 and 14 to focus on developing skills that will help strengthen and empower the caregiver community,” Ms. Griffin said. “At this training, they discussed strategies for engaging with new families and sharing resources and information with others who may be feeling alone and isolated on their loved one’s LGS journey.
“The LGS Foundation ambassadors are volunteers who don’t necessarily come to this role with any background in supporting families in crisis,” she said. “With this in mind, an expert was brought in to provide tools for self-care, finding a healthy balance, and setting boundaries so that these caring individuals do not become overwhelmed and burnt out in their desire to pay it forward.
“At the conclusion of the meeting, the group was encouraged to lean on one another as we move forward to build a stronger, more engaged community that has access to support and resources, and never feels the devastation and isolation that the LGS diagnosis so often brings,” Ms. Griffin told the News-Press.
Those with LGS often experience gastrointestinal issues, constipation and diarrhea. Some are tube-fed, and most are not sleeping. Kids wake often throughout the night.
“Theo is doing well now in that he has less than five seizures a day. That’s what you would call an improvement. My son requires assistance with ADLs (Activities of Daily Living),” said Ms. Griffin.
Those with LGS have a higher than average mortality rate. They can’t be left alone. Head injuries are the leading cause of death. Another primary cause of death is something called SUDEP (Sudden Unexpected Death in Epilepsy).
“Theo is non-verbal, muscular and strong, with a high pain tolerance,” said Ms. Griffin. “I’ve looked down before and seen broken bones. One time I sent him to school, and the teacher called and said he got to school with a broken finger. Our kids wear helmets with face masks.”
For those who are higher-functioning that can walk and talk, there are behavioral challenges including self-injury or injury to others.
Ms. Griffin, a single mom sharing custody with Theo’s dad, also pointed out the condition can have a real impact on family, siblings and caregivers.
“Theo is a two-person job, not a one-person job. I manage but I have to be super careful. Theo is 20 years old, 5 feet 10 inches, 160 pounds, while I am 5 feet 4 inches, 130 pounds,” she said.
Caregivers can experience chronic traumatic stress.
“Theo can be at his dad’s, and I can sit up thinking I heard a seizure,” said Ms. Griffin. “You are always primed and ready for the next seizure. When your child has significant needs, parents think self-care is selfish. But what I need is to make sure that I’m OK, so that I can continue care-giving for my son.”
Ms. Griffin discussed her work with the LGS Foundation.
“When I started with the foundation, it’s like any other nonprofit role, you wear multiple hats and carve out the role as you do it,” she said. “I connect with industry supporters and am the first contact for families who are reaching out to us. Any phone messages and emails come to me as online forms.
“I will always make an introduction to that family. I send an email with a website, introduce myself, and offer to connect them with an ambassador,” said Ms. Griffin.
“Hopefully the ambassador is someone in their state or a neighboring state. Because we are a rare disease we will always have greater needs than our funds can accomplish.”
“People think of people with disabilities as being able to maybe hold a job packing groceries or walking a dog. Theo can’t work at all. He needs constant care,” she said.
But she added, “I hate it when people look at Theo and our lives and feel sorry for us. I want Theo to be happy, I want people to care about him, not just for him. It’s really sad that people with severe disabilities are looked at as objects of pity.”
But Ms. Griffin has also seen compassion.
“ I don’t hide. I take him out in the community,” she said. “He fell asleep and had three seizures in 45 minutes, and (there was a large) number of people that came up to us offering help.
“I have seen the best of humanity in how they interact with Theo.”