Mila has had a big year! Following gene therapy a year ago, Mila was able to start school and loves it. With the help of an aid and a nurse, she is able to join her peers at a public school in San Francisco, where she’s learning how to be in a classroom, socialize with new friends and how to deal with some of her newfound emotions. We weren’t sure if Mila would get to go to school when her seizures were at their worst, so bundling her off every morning and watching her walk into her classroom herself is an indescribable feeling.
Mila’s seizure control has improved this year with the help of new medications, which allowed us to take a family trip to Hawaii (where her mom is from). It was amazing watching Mila on the beach without serious fear of a heat induced seizure.
After regressing and losing almost all her words last year, Mila remains nonverbal. However, she is clearly wanting to communicate and has started using an AAC device through her school. Her walking is getting stronger and although movement can be challenging due to frequent myoclonic seizures, she is generally improving.
Mila continues to be absolutely obsessed with dogs, Ms Rachel, chocolate ice cream and firetrucks. She is also her baby brother’s biggest fan, even if she sometimes has to smack him to keep him away from her stuff.
Mila remains loving, fiercely independent (bordering on contrarian), curious and brave. She is the joy of our lives. Thank you for the continued support of our brave little girl.
2025 Update
In the past year, Mila has had so many ups and so many downs. She has regressed and lost almost all of her words, which has been incredibly hard for her and for us. At the same time, she has just recently started walking, and we couldn’t be prouder of her. She is unstable and wears braces, but she moves fast, loves chasing Petunia the cat around the house, and is obsessed with kissing herself in the mirror. Watching her wander around the playground when we weren't sure if she would ever do so is the best thing we've experienced to date as parents. She has a newfound love of Ms Rachel, artichokes, school buses, and putting sprinkles on everything. We try to make it to family music class once a week, where Mila likes to climb on her music teacher's lap and try to play all the instruments.
Mila’s seizure activity increased in severity this year and changed in regards to triggers, but she was also lucky enough to be part of a phase 1 gene therapy trial. We are optimistic and hoping for the best.
Mila remains happy, sweet, outgoing, loving and curious, and the absolute joy of our lives.
Thank you for the continued support of our brave little girl.
2024 Story
Our lives shattered on July 10th, 2023. That day, our perfectly healthy seven-month-old baby girl was rushed to the hospital for a complex seizure - one that was so difficult to control, doctors had to intubate her to get it to stop. What we hoped was a one time febrile seizure instead became a recurring nightmare. Genetic testing confirmed a SCN1A mutation, and Mila was diagnosed with Dravet syndrome in early November 2023, just weeks before her first birthday. In those dark days post diagnosis, it felt like all our dreams for our family were over.
Mila spent many weeks in the hospital during her first year of life. She has been intubated twice and has had seizures that have lasted close to an hour. Several times, we have stood by helplessly, fearing for her life, as doctors struggled to control her seizures. Mila is on three daily medications to manage her seizures. Despite these medications, Mila still has upwards of 45+ myoclonic seizures each day. Mila has fallen behind on milestones, but we believe in her and are doing everything in our power to help her. She attends multiple therapies every week including physical, occupational, and speech therapy.
Mila cannot yet walk but scoots like crazy and is surprisingly quick. She is not very verbal, but extremely communicative in her facial expressions (just like her mom). It is very clear what she likes (strawberries) and what she doesn’t (avocados). Although she is often the smallest and least coordinated toddler on the playground, other kids will hide their toys from her because she is so excited to play.
When Mila thinks something is funny, she gives you a meaningful sidelong glance as if to say “did you see that?” Mila has a striking ability to charm complete strangers and get their attention with her toothy little grin and ecstatic waves. Our first and only child, Mila is now a bright and happy toddler who loves balloons, slides, ice cream, flowers, and taking long evening baths with lots of bubbles.
Mila’s days are filled with love and joy. However, Dravet is a constant source of fear and anxiety for our family. Because we never know when a seizure will present, we are always on guard. Every day requires thorough planning and constant attention to prevent seizures. Every night requires specialized monitoring devices to protect against Sudden Unexplained Death in Epilepsy (SUDEP), a condition that disproportionately impacts those living with Dravet. At every turn we must manage the opportunities to see Mila explore and grow, with the very real fear of a seizure episode.
As a family we face the constraints brought on by medical expenses, as well as the career implications of being full time caretakers to someone with such involved and complex medical needs. The trauma and the psychological burdens of living with this syndrome are both very current and lifelong: we spend a lot of time reflecting on anticipatory grief and how we can live as best we can in the here and now.
We are so proud of Mila and everything she has accomplished. We live in that very strange space between hope and fear - remaining positive about the research breakthroughs occurring while managing the risks the best we can. We will never stop fighting for Mila - and all of those affected by this devastating condition. It is possible that we will see a cure for Dravet in our Mila’s lifetime - but that possibility will only become a reality with support from those who love and believe in children like Mila.
