Can anything good come from this LGS life? The answer for me is… Yes!

By Darla Davison

This is a question I’ve asked myself many times over the years. Through the constant ups and downs and watching my son, Aaron (age 35), suffer for decades, my answer has varied. In the end, I can see that my faith in God has grown and my heart has too. The older I get the more I realize the most precious thing in life is relationships and love. Can these things take a beating through life’s adversities? Sure. The hard pill to swallow is that adversity makes us stronger and more resilient, it can also deepen our relationships and our capacity to love.

I can’t imagine my life without my LGS family and all the relationships that I have loved over the years. I also enjoy the opportunity to connect with new families as a Family Ambassador for the LGS Foundation. Recently my LGS family has grown and stretched across the globe to include people who don’t look like me or speak my language yet share in the sufferings of wading through life with a sick child who is totally dependent and has very special needs. We have much in common yet our lives are so different.

I met Gayani through the LGS Foundation’s Facebook page several years ago. She simply reached out. I responded and we began to chat. Our friendship grew into working together to find and gather other families in her country struggling with LGS and other neuro disorders. No one should have to navigate this difficult life alone. She didn’t know anyone in her country with LGS. She was able to find a sponsor and put together two separate meetups inviting about 30 families throughout her country to come out of their homes, gather together and receive support and encouragement for the journey.

In Sri Lanka, a tiny tear-shaped island south of India, most families are not given a proper diagnosis, or perhaps don’t have the capacity to understand the diagnosis. They just know their kid can’t walk or talk or meet milestones, has “fits” (seizures), or is totally dependent on them for survival. The country struggles with a corrupt government and extreme poverty. Many families live on less than $100 per month income. There is zero government support for these families and no help with medications, medical equipment, therapies, special education and life-sustaining necessities. So, they do their best. They stay home, they carry their children in their arms as long as they have the physical strength and they fight to survive another day. They live with the fear of not knowing what would happen to their child if they got sick or were unable to care for them. School is only available if your child can walk and lives near a city. In most cases you are treated like an outcast or you are thought of as “cursed” if you have a disabled child. A lot of these children spend the day on a mattress or on the floor – no therapy, no fitted chair, no respite, no community, no hope.

Gayani is a fighter and she knows how to survive as a Sri Lankan. Her son, Nethupa (age 12), was diagnosed with LGS after having infantile spasms, which prompted her to research and get involved in the LGS community. Gayani is intelligent, resourceful and has good English and computer skills, which is not common in Sri Lanka. She is also an Ambassador for the LGS Foundation and has a heart for other families with LGS and, really, any family with a special needs child.

Gayani lived in isolation in a small dark bedroom to protect her son from a drunken and abusive husband who gave no attention to his son with LGS. She struggled through and survived the Covid shutdown by teaching online English classes to young children in order to buy seizure meds and food for her son’s ketogenic diet. She reached a breaking point in her living situation and I knew we needed to help. So, we built them a house. When I say “we”, I mean an army of over 100 people who gave money, prayed and worked fundraisers until it was finished. It was a miracle. They are now free and thriving.

In the meantime, the other precious Sri Lankan families were struggling to survive through Covid, a national economic crisis and civil unrest with protesting in the streets. We started to help a few families with food and medication and developed a connection with them through Gayani. I’ve learned in my faith journey that the Lord loves the whole world and I should too, and one of the purest loves is to love sacrificially, as Jesus did. So, in faith and hope, my husband, Dan, and I committed ourselves to continue down this path. Soon after that our good friends, Craig and Kathy, jumped in with us.

Fast-forward to January 2024. Dan and I, and Craig and Kathy (with the help and prayers of friends, family and churches), were able to travel to Sri Lanka to meet Gayani and the other families face to face. What an experience, what a privilege. Despite the language barrier there was a great connection made, mutual understanding and love. We had a large meeting with about 20 families that included a meal, gifts, a grocery bag of food, toys for the kids and a whole lot of encouragement, hugs and picture taking. We invited a local professional counselor who gave an excellent speech followed by a time of open-mic sharing. It was beautiful. It was truly incredible.

My heart was overflowing and my love bucket was full. The outpouring of gratitude from these families was overwhelming. They are so sweet. They smile, they cry, they are kind and gracious and they love their kids. We all left thankful and humbled to be part of it. Who knew this was even possible and that we would have the privilege to be in this place.

I think about the many years we have suffered through LGS wondering what good could come from it. Suffering is global and has no concern for location, status or identity. I do believe there is purpose in my suffering. The Bible says, “Even in times of trouble we have a joyful confidence, knowing that our pressures will develop in us patient endurance. And patient endurance will refine our character, and proven character leads us back to hope.” “For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever!” (Romans 5:3-4, 2 Corinthians 4:17)

With LGS, some of our days (okay, maybe most) are spent just trying to survive. We suffer through it hoping things will get better. If suffering in this life is inevitable, I will make the best of it and trust the Lord for the outcome. As a Christian I’ve been taught to, “love my neighbor as myself” (Mark 12:31). Well, “neighbor” has taken on new meaning for me these days. Love can compel us to do amazing things. Through love and relationships, both near and far, we can redeem our suffering and turn it into triumph. I now have more beauty and less fear in my life and the world seems smaller than I once thought.