Lainy’s Story

Lainy means “bright, shining light” and that perfectly describes our 6-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, a Gastrostomy Tube implant surgery, and frequent tests, blood draws, doctor appts, and therapies.

When we get asked how Lainy is doing now, I consciously try to first talk about all the amazing things Lainy is doing, despite her battle with Dravet Syndrome.  This year was especially challenging for Lainy, but we are so proud of what she overcame and how much she has grown from all those challenges.  Lainy is now a big Kindergartener, attending partial days of school with a 1-on-1 nurse.  She’s really found her voice, has built up her confidence, is learning how to advocate for herself, and has become so much more social.  I had the opportunity to attend Lainy’s first field trip with her and my mama heart was so full seeing her be called by name by classmates, asking her to come join them.  Or when she’d call other classmates by name to join her, again, my heart about exploded.  Lainy still loves to be in the water and we feel so grateful that swimming is something Lainy can tolerate.  She loved being able to swim in our neighborhood pool this summer, and she looks forward to her weekly indoor swim lessons thru the fall, winter, spring.  We have been blessed over and over and over again that Lainy’s grandparents live nearby and visit often – she adores her Nana, her Grandma & Papa, and her Mimi & Papa and knows she is the absolute luckiest to have them so involved in her life.  Lainy had a G-tube placed this summer, and she accepted it better than we ever could have imagined – this was a huge answer to prayer.  Lainy also spent the bulk of the summer in full-day in-home ABA with a behavioral therapist.  We all learned a lot during this time, and the programs we put in place with Lainy have helped her (and Mat & I) quite a bit.  One of our biggest highlights from the last year or so was Lainy getting her service dog, Aspen.  Lainy & Aspen have bonded so well and Aspen has truly completed our family and become a sister to Lainy.

We do though want people to understand her battle with Dravet Syndrome, because it impacts her life every moment of every day.  I could go into detail about medications, day and night monitoring, triggers and precautions…but I’ll just stick to the big updates here.  I can’t remember the last day where I didn’t see Lainy have a seizure.  I know at least in 2025 she's had zero seizure-free days.  Most nights she falls asleep having seizure activity and wakes up the next morning having seizure activity.  She has a few hours in the morning where seizure activity is usually low, and that’s when we try to pack in as much as we can – we cram in as much fun and as much adventure as we can in those hours, but it’s also the safe hours she can go to school, have doctor appts, have therapies, etc.  When the afternoon rolls around, more days than not her seizures roll around too and she often has seizure activity for hours straight.  It is a rare, and I mean very rare, for us to be out of the house with her after 1PM.  So far in 2025 Lainy has had 24 seizures go status.  A status seizure is a seizure where we have to emergency intervene with medication and oxygen, usually calling 911, and sometimes Lainy is emergency transported to an ER.  Status seizures usually cause a loss of oxygen and historically have not stopped without intervention…they are life-threatening.  And she’s had 24 just this year.

So in short, Lainy’s battle with Dravet Syndrome is still very active, and it’s tough.  But Lainy is tough too and she’s fighting stronger than ever, and still living such a full life.  Her days have struggle, but they also have so much joy.  And for that we are SO THANKFUL.  We are so proud of her – our amazing, resilient, brave, strong, kind, funny, smart, loving, joyful Lainy girl.

What is Dravet Syndrome?

As stated within dravetfoundation.org, “Dravet syndrome, previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a medication-resistant developmental and epileptic encephalopathy that begins in infancy and proceeds with accumulating symptom burden 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 [1].

Dravet syndrome is classified as a developmental and epileptic encephalopathy (also known as a DEE). DEEs are a group of severe epilepsies with frequent and difficult to treat seizures and significant developmental delays. Seizures in Dravet syndrome usually begin during the first 2-15 months of life, often in the presence of fever or warm temperatures. 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 and abnormal EEGs often emerge during the second or third year of life. Common issues associated with Dravet syndrome include:

• Prolonged seizures
• Frequent seizures
• Behavioral and developmental delays
• Movement and balance issues
• Orthopedic conditions
• Delayed language and speech issues
• Growth and nutrition issues
• Sleeping difficulties
• Chronic infections
• Sensory integration disorders
• Dysautonomia, or disruptions of the autonomic nervous system which can lead to difficulty regulating body temperature, heart rate, blood pressure, and other issues

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 [2,3].

Research for improved treatments, particularly disease-modifying treatments, offers patients and families hope for a better quality of life for their loved one. Earlier diagnosis, expert treatment guidelines, newer antiseizure medications, and clinical studies for gene-targeted therapies are all improving the future outlook for patients with Dravet syndrome.”

What does the ‘Dash for Dravet’ event entail?

‘Dash for Dravet’ is Dravet Syndrome Foundation’s 10th annual Turkey Trot, which we’ve participated in the last 6 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 for the event.

Where do donations & proceeds from the event go?

Proceeds and donations 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.

THANK YOU!

Thank you, Team Lainy.  Whether you joined Lainy’s 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