Lainy’s Story

Lainy means “bright, shining light” and that perfectly describes our sweet 5-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, countless ambulance transports to ERs , many video EEGs with multi-day hospital stays, a Vagus Nerve Stimulation (VNS) Implant surgery, and frequent tests, blood draws, doctor appts, and therapies.

We often get asked how Lainy is doing now and I tend to stumble a bit on how to answer that.  Because we first want to tell that person all the amazing things she’s doing, despite her battle with Dravet Syndrome. Things like…she now attends a 2-hr preschool with 1-on-1 support and she absolutely loves it.  Or that her vocabulary has significantly increased and it’s been so fun to watch her communicate more and more.  I’d share that she has a very strong passion for swimming, Bluey, stickers, her grandparents, playing doctor, kitchens, and anything to do with water, sand, slime, paint - when she loves something, you know it, because she loves it very deeply!  I’d also share that she enjoys going to her therapies weekly, and continues to work hard to meet OT, ST, and PT goals. More recently I share that she has a new sister and best friend, her seizure alert service dog named Aspen!

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, 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.  The first half of the year we were averaging 1 prolonged seizure a month...but we just had 5 in the last month.  Prolonged seizures are where we have to emergency intervene with medication and oxygen, usually calling 911/paramedics, and sometimes are emergency transported to an ER.  Lainy now loses oxygen with every prolonged seizure, so each one is life threatening.  On a positive note, our monitoring efforts have been successful and we thank God that we've been able to act so quickly when these seizures occur.  In addition to Lainy's prolonged seizures, Lainy's 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 9^th annual Turkey Trot, which we’ve participated in the last 5 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. 

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. 

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.

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