This Thanksgiving will mark the 4th year we’ve participated in Dravet Syndrome Foundation’s ‘Dash for Dravet’ fundraiser. Each year we’ve watched Team Lainy grow bigger than the last, and we’ve been overwhelmed in the best way possible by the encouragement, support, prayers, and generosity Team Lainy has brought. Last year Team Lainy raised $4133, which was absolutely amazing. This year we are so excited to see what Team Lainy can raise. Proceeds benefit the Dravet Syndrome Foundation whose mission is to raise money for research into Dravet Syndrome and related childhood epilepsies while helping afflicted individuals and their families.
If you are interested in helping us reach that goal, or if you want to learn more about Dravet Syndrome to help raise awareness, or if you simply want an update on how Lainy’s been doing, this fundraising page has it all!
Lainy’s Story
Lainy means “bright, shining light” and that perfectly describes our sweet 4-year-old daughter. Lainy has brought so much joy into our lives and the lives of so many – she has the most beautiful smile, a sharp sense of humor, and a love for people that you can see and feel.
When Lainy was 4 months old, she had her first seizure, and after multiple more prolonged seizures and genetic testing, she was diagnosed with Dravet Syndrome at 6 months old. Since then she’s had thousands of seizures, 15 ambulance transports to ERs, 3 video EEGs with multi-day hospital stays, a Vagus Nerve Stimulation (VNS) Implant surgery, and countless tests, blood draws, doctor appts, and therapies.
We often get asked how Lainy is doing now and I stumble a bit on how to answer that. Because we first want to tell that person all the amazing things she’s doing and exciting things to come, despite her battle with Dravet Syndrome. Things like…she loves swimming and is now able to hold her breath under water. Or that she’s participating in hippo-therapy and gets so excited to ride her horse J.R. each week. Or that her vocabulary has significantly increased in recent months and she’s stringing together more words like “I love you Mama and Dada”. Or that she’s becoming more social, introducing herself to kids at the playground “Hi, I’m Lainy. Play with me? Best friends?”. Or that she has a very strong passion for grocery stores, pretend cooking, ice-cream, Cocomelon, Sesame Street, and stickers. We also share that as of this past March, Kristin is now home full-time with Lainy, and we’ve been working hard as a family to reach OT, ST, and PT goals. And most recently we’d share that we are hopeful that Lainy will be able to attend an adaptive preschool program in early 2024, and are eager for when we will be able to bring home her seizure alert service dog in late 2024!
But at the same time, we want people to understand her battle with Dravet Syndrome, because it impacts her life every moment of every day…and that’s not an exaggeration. I could go into detail about medications, oxygen, day and night monitoring, triggers and precautions…but I recognize this is already very lengthy so I’m going to give you the big updates here. On a positive note, we currently have the best control over the larger prolonged seizures that we’ve ever had. Lainy hasn’t been in an ambulance since last December, and we had 3 ambulances between last November/December alone. So that’s huge. But unfortunately, Lainy’s daily myoclonic seizure activity is the worst it’s ever been. She has myoclonic seizures every single day, and often hundreds per day, hours out of her day where we have to pull her from activities or pivot plans. So yes, it’s very much still an active battle and Dravet is a tough component…but so is Lainy. We are in awe of Lainy’s bravery, strength, and resilience, and are so proud of the way she responds to the challenges that come her way. She pushes thru each challenge with all her strength so she can get to doing the next thing that brings her joy.
What is Dravet Syndrome?
As stated within dravetfoundation.org, “Dravet Syndrome is an intractable developmental and epileptic encephalopathy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime. Dravet Syndrome is a rare disease, with an estimated incidence rate of 1:15,700, with the majority of patients carrying a mutation in the sodium channel gene SCN1A. Dravet Syndrome is classified as a developmental and epileptic encephalopathy (also known as a DEE), which is part of a group of severe epilepsies with frequent and difficult to treat seizures and significant developmental delays. Seizures are frequently prolonged, and are not well managed with current medications. Patients present with a variety of seizure types that generally evolve with age. As with all developmental and epileptic encephalopathies, Dravet Syndrome includes more than just difficult to control seizures. Other comorbidities such as developmental delay emerge during the second or third year of life. Current treatment options are limited, and the constant care required for someone suffering from Dravet Syndrome can severely impact the patient’s and the family’s quality of life. Patients with Dravet Syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections. Research for improved treatments, particularly disease-modifying treatments, offers patients and families hope for a better quality of life for their loved one.”
What does the ‘Dash for Dravet’ event entail?
‘Dash for Dravet’ is Dravet Syndrome Foundation’s 8th annual Turkey Trot, which we’ve participated in the last 4 years. It’s a virtual 5K, meaning you can walk/run/jog wherever and whenever! It’s been fun to see friends and family all over the country participating in the same event but in their own way, own place, and own time.
Don’t feel like actually registering for a 5K but still want to help us raise funds? No problem! There’s an option to donate without registering.
Where do donations & proceeds from the event go?
Donations and proceeds benefit the Dravet Syndrome Foundation whose mission is to raise money for research into Dravet Syndrome and related childhood epilepsies while helping afflicted individuals and their families.
How does spreading awareness help?
1. Increase knowledge in the general public - Lainy has intractable epilepsy with status epilepticus, which essentially means her seizures do not just stop on their own…there has to be emergency intervention. The longer they go on, the harder they are to stop, and the more damaging they are, so it’s critical that actions are taken quickly with emergency help on the way. To learn more about seizure aid, so you can be prepared to help in the event you witness someone having a seizure, go to epilepsy.com/firstaid. Also, I get that Dravet Syndrome is very rare, so I’m not offended when paramedics and ER doctors don’t know about the disease and what it means for Lainy, but I’ll be really excited when we’ve raised awareness enough that they do.
2. Improve early diagnosis - This is crazy, but there are actually seizure medications that make seizures WORSE for Dravet Syndrome patients due to the mutation in the sodium channel gene SCN1A. Improving early diagnosis means having the right care, the right medications, and the right support…earlier. Lainy’s medical team has been focused on improving seizure control and addressing developmental concerns, while the Dravet Syndrome Community has taught us how to prevent, monitor, and live with seizures.
3. Raise funds for research – There is currently no cure for Dravet Syndrome, but researchers and scientists, like encoded.com and stoketherapeutics.com are actively working to create one. We have this beautiful dream where one day Lainy is cured; we just really hope a cure comes in her childhood.
Thank YOU!
Thank you, Team Lainy. Whether you joined her team in form of encouragement, support, prayers, participating in the ‘Dash for Dravet’, spreading awareness, or donating to the cause. We appreciate you!
With Gratitude,
Kristin, Mat, and Lainy