Myla-Rose and “My Cause, My Cleats”

Our journey began at 3 months of age when Myla started having seizures that looked like tremoring on one side while I nursed her. After 3 episodes in a 12 hour period lasting about a few minutes each we decided to head to our pediatrician. I videoed every episode, I wanted to make sure I had proof of what was happening and to ease the gut wrenching feeling I had as a mom. Upon immediate viewing, her pediatrician sent us directly to Children’s Hospital of New Orleans. What was our first stay of 5 days (later to be known as our second home because of the frequent stays she would have in the future) they did a full work up from scans, to bloodwork, spinal tap, and eeg that showed nothing. Despite hearing clear or normal as a good thing, my gut told me different. Back home to regular life we went but this was just the beginning. Seizures became longer, more violent, more frequent, excessive visits from our local fire medics, constant phone calls back and forth with doctors, 2 older siblings witnessing the unthinkable of their baby sister, and meds weren’t helping. Our visits to the hospital became every few days by the time she was 4 months old. I never stopped videoing, I tried to capture every episode length, duration, etc as much as I could to have more than enough visual evidence to help get her the right diagnosis. Her first intubation and airlift landed us in the PICU after a 2 hr seizure where we met Dr. Jeremy Toler (now her current neurologist epileptologist) who viewed her videos, reviewed her chart and said, “prepare for the worst so you can enjoy the best.” He suspected she had Dravet syndrome. Genetic testing was our next step, but it would take time and our goal was to manage these seizures at home. By 5 1/2 months it was confirmed, Dravet syndrome due to an SCN1A mutation de novo. Myla is now a statistic of being 1 in 15,700 kids who are diagnosed with this terminal disease. We had no clue where to began except the two resources our neurologist gave us, Dravet Syndrome Foundation (DSF) and Louisiana Epilepsy Alliance (LEA).

DSF provided instant feedback, guidance, parent guide breakdown, the dos and donts, and multiple parents around the world giving advice whom have already walked this journey before us. DSF has identified specific neurologists that treat  Dravet syndrome, so we see Dr. Ethan Goldberg from the Children’s Hospital of Philadelphia (CHOP) who collaborates with our local neurologist to provide Myla with the best options for her journey with Dravet. LEA was able to help us navigate early resources for extra assistance within the state, provide seizure first aid training, and connect with us on a personal level because these administrators are warrior parents too!

Dravet syndrome is more than seizures. As her parents, we vowed to give her the best quality of life ever which meant that she was going to break down the barriers that are known in Dravet syndrome. She is going to set new standards for those who follow in her footsteps. Instead of constantly thinking about the what ifs, we turned it into she is. All of us have barriers to overcome but if we are given the right tools, guidance, support, love, and opportunity there is nothing that we can’t do in this life. As her parents, we strive for this every day of her life. We give her countless opportunities to be a kid, we give her every tool we can find to be better than the day before, we are constantly researching and discussing how to make her quality of life better, and there is nothing that can stop this drive. We know that we can’t control Dravet syndrome whether it’s the seizures, the speech impairment, the motor difficulty, the heat sensitivity, the visual deficits, or the poor immunity, etc. But we know that we can manage these things. We teach Myla how to manage this everyday of her life because she is an independent little 4 year old girl now who is able to express her needs, wants, likes, dislikes, and dreams. Her smile, her love and those hugs is what drives us all to be better individuals for her. She knows no stranger and will love you for who you are! She has shown resilience, strength, passion, determination, grit, and always battling since the day she had her first seizure at 3 months of age. There is truly nothing that stops her or gets
in her way. And as her parents we want nothing more than to see a
cure for Dravet syndrome!

The NFL’s My Cause, My Cleats helps spread awareness for the passions outside the game of football. Our three kids have grown up in this NFL world and love the game and the Saints. As a family, we decided what better way to share Myla’s story and help the next person, so we chose the Dravet Syndrome Foundation. DSF not only gives back to these kids affected by Dravet, but they support the entire family unit! There are countless opportunities to get involved, raise awareness, and support funding for life changing research that will impact the lives of all who live with Dravet. We are proud of those who walked this path before us, Myla takes 3 medications daily to manage her seizures, and 2 of them are just shy of being 5 years on the market. She would not be here today had it not been for all the work DSF does behind the scenes to make sure medical advances continue to promote a more
manageable quality of life for kids like Myla.

Charles Byrd, father of Myla-Rose, and an assistant NFL strength and conditioning coach for the New Orleans Saints since 2008 will wear custom kicks designed by Ebbie Thomas, owner and artist of Second Line Shoes, on Sunday December 3, 2023 when the Saints host the Lions inside the Mercedes Superdome. My Cause, My Cleats is for the Dravet Syndrome Foundation. We are blessed to be able to honor our daughter, Myla-Rose and her fight against the storm while spreading awareness for the Dravet Syndrome Foundation.

#CureDravet
#DSF
#neworleanssaints
#secondlineshoes
#mycleatsmycause
#openspacestudios

We cannot thank you all enough for everything you have blessed our family with: @NFL, @NewOrleansSaints, @EbbieThomas, @SecondLineShoes, @OpenSpaceStudios, @CandraGeorge, @DravetSyndromeFoundation, @CHNOLA, @CHOP, @LEA

The Byrd Family