While looking through baby name books several months before our bundle of joy was to arrive, one name stuck out among all the others, Karley. There are a few different interpretations as to the meaning of her name, but made the decision based on the definition in our name book; womanly and strength. We envisioned bringing another vivacious, intelligent, beautiful little girl into this world that will do great things for others and herself in her time on earth.
Looking back, we are convinced that choosing Karley as her name is no coincidence; the Lord knows what he’s doing. Even though it may appear that we’ve been punished, we trust that the Lord has placed this burden on Karley and our family for a reason. We do not fully understand why yet and we may not for some time, but someday his plan for her will be unveiled. Karley will have to be strong-willed and determined to overcome her life-long ailment and still achieve her full potential as a person. We will be there for her every step of the way and through our faith, unwavering love and support from family and friends, and the determination that’s in her DNA, she will beat the odds and conquer her diagnosis of Dravet Syndrome.
To date, Karley struggles daily. She turned 6 years old this past April. She has battled a lot of sickness this year which in turn hasant made her seizures any better. She still has pro-long seizures weekly lasting up to 15 minutes, and around 20-30 short seizures daily. She is still on three different seizure medications. Karley continues the fight each day with a smile on her face. This year, she made a wish to the Make A Wish Foundation and they granted her, her very own splash pad for the backyard. She is one very happy little girl.
Dravet Syndrome has a hold on her but her strength is fierce and she continues to strive each day.
Grace was born on May 2, 2000 in Denver, CO. She was a perfect baby girl; 10 fingers and 10 toes… She had her first seizure on December 23, 2000, she was 7 months old. The seizure lasted several minutes and was our first of many trips to the hospital. She had no other symptoms the seizure was diagnosed as febrile.
Grace suffered several more seizures over the next few months many lasting 30 minutes or more. April 2001 we were told she had epilepsy and began the first of many prescriptions cocktails in an attempt to control the seizures. Over the next 12 months she continued to have several seizures a day with regression in her developmental progress. Our need for better answers and outcomes took us from Denver to the UCLA Medical Center as well as a two week stay at the Children’s Hospital in Wisconsin. We attempted the ketogenic diet while her medications continued to be tweaked and changed- seizures continued and we still had no clear diagnosis.
Late in 2004 we moved to Frisco, TX and got more than a job transfer! We were referred to an amazing doctor at the Children’s Medical Center of Dallas. After countless seizures, treatments, medications and doctors at the age of 4 ½ Grace was diagnosed with Dravet Syndrome. We finally had a name for the challenges our perfect baby girl was suffering.
Today, Grace is a happy, outgoing, 18 year old at a developmental age of 4. She still has seizures 4 out of 7 nights a week, which is controlled in her/our world.
She is a senior at Frisco High School in the Life Skills class. She is a member of the Special Needs cheer team and participates in the Best Buddies program. She loves to dance, sing and listen to her favorite groups; One Direction and The Cimorelli Sisters. She loves to get her nails done and shop for make-up and jewelry.
There are two quotes hanging in our house; “Grace makes things possible not easy” and “Grace changes everything” – We love our Gracie girl!
Breccan is precocious, very funny, and so loving.
His very favorite thing to do? Grocery shopping. Imagine seeing this 2-ft little man with a kid-sized shopping cart. He saunters down the isles - literally saunters - and smiles at every passing stranger with a wave and a loud ‘heyyo!’. He owns that place J
That’s today. And we cherish it because it feels like any moment that personality could be dimmed by medication or permanently damaged by Dravet.
Breccan had his first seizure at only 4 months old. He had his shots at the pediatrician that morning. By that evening was running a fever.
Shortly thereafter, the left side of his body started to shake; the start of a worst nightmare scenario that we’ve already lived once. Our second son Caeden has been afflicted by Dravet syndrome since he was 9 months old.
Because of his brother’s diagnosis, genetic testing was done to see if Breccan also had the SCN1A gene mutation. We got the diagnosis we most feared.
First thought? This can’t happen. Neither my husband nor I have the mutation that affects 2 of our 3 children. But we’ve since learned about mosaicism, and that reproductive cells can have their own mutations that are otherwise undetected with conventional genetic testing. So for all the care and genetic counseling in advance, we somehow beat the odds.
Breccan is now 3 ½ and has had 22 status seizures. ‘Status’ means that the seizures don’t stop on their own. His seizures require rescue medication at home, and additional rescue doses from the EMT’s. Each dose of rescue meds brings a risk of respiratory distress. So most seizures include a trip to the hospital via ambulance.
Watching your child have a seizure is the scariest thing to see as a parent. But then watching them recover after a seizure can be just as terrifying. You never know if they’ll make it through, or whether they’ll have lost some speech or motor skills, or a part of their personality.
So every day is cherished and every trip to the grocery store accommodated.
Research and education have been pivotal in keeping Breccan’s seizures somewhat under control and his development on track. And it is because of the Dravet Syndrome Foundation and its families that our children are finding better care and more life options than ever before. Thank you for reading Breccan’s story.
Our son’s name is Caeden. He was diagnosed with Dravet Syndrome at the age 1 ½ years old, almost a year after he began having seizures as a 9 month old.
In February of 2008 when Caeden had his first seizure. Caeden was playing, and it was as if someone suddenly turned out the lights in his mind. He stared off in the distance, not responding to his mom’s voice or physical contact. Then he fell over, and wouldn’t be responsive again for minutes. He began to turn blue, and we found ourselves in a nightmare of sorts. And this was the first of many.
In October of 2008, after 19 seizures that all resulted in being rushed to the hospital, Caeden had his worst seizure so far-lastly over an hour long. At this point in a seizure, the brain is akin to an engine running at redline with no oil. Damage occurs. And for children at this stage of ‘status’, the options are extreme amounts of anti-seizure drugs, or an induced coma. Luckily, the doctors were able to bring him out without inducing a coma. But it was a close call. During our 10-day stay at ICU, Caeden’s neurologist finally had enough information to diagnose him with Dravet syndrome. We finally had a target. But despite that target, the doctors couldn’t give us answers on treatment protocols, short and long term impact, or mortality.
To the world, Caeden is our second of three boys. He is 11 years old and extremely gregarious. Caeden loves hugs, loves meeting people, loves to sing and perform on stage, and loves making people happy. He also loves his dogs, Karo and Oreo.
But to meet him, you might notice his behavior is a little different. He may surprise you (as he does many) by running up and giving you a hug. He’ll introduce himself, but it will be hard to understand everything he says. If kids are meeting him, they’ll often look at us and ask “why does he talk like that?” That one’s kind of a heartbreaker, but it’s also kind of empowering.
When we paint the picture of Caeden for others, we get to be reminded of just how much he has been through and how happy he is. That he is a fighter, and someone to be admired.
We explain that Caeden talks like that because he has seizures – a lot of them in fact. Some of them cause damage, and it makes it hard for him talk and move the way other kids do. But he IS happy to meet you.
Since Caeden’s first seizure at 9 months old, he has been fighting through:
Despite it all, this boy is as innocent and happy as it gets. It’d be amazing to spend a day in his world. And he helps remind us that there are only a few really important things in life.
Caeden will not be like other children, which is okay because of what he is able to bring to the lives of others. If you know him, you know exactly what I mean J
That said, were it not for the growing awareness and research of Dravet Syndrome, Caeden’s life may have been cut significantly short, or he may have continued to suffer mis-diagnosis and incorrect treatment for years, as many kids have done.
Research and education have been pivotal in recovering Caeden’s quality and length of life. And it is because of the Dravet Syndrome Foundation and it’s families that our children are finding better care and more life options than ever before.
Saturday, September 22, 2018
9200 World Cup Way
Frisco, TX 75033
Dravet Syndrome Foundation
PO Box 3026
Cherry Hill, NJ 08034
Tax ID #27-094627