First and foremost... Ryan is our baby boy and he makes our family complete.
He is a wonderful, giggling, boisterous, laughing, silly Gift from God. He happens to have a seizure disorder, but it is only one small part of who he is.
Enjoy some favorite family photos to see for yourself!
Ryan's Lions
Raising awareness for sodium channel epilepsy
Raising awareness for sodium channel epilepsy
Ryan's Story
Ryan was born in the summer of 2007 after an uneventful pregnancy and easy delivery. Having not found out the sex of the baby, we were thrilled (and surprised, my money was on girl) to have another boy in the family! Quite easily we all settled in with Jacob loving, and loving on his new baby brother. We were all looking forward to a Christmastime trip back to California to show off our new baby.
Sadly, that trip and much of 2008 did not turn out as planned. While in California Ryan had his first seizure at 5 months of age (lasting over 45 minutes) and spent "Baby's First Christmas" in the PICU at UC Irvine.
At that time we were told his seizure was likely a complex atypical febrile seizure and that seizures were common, and benign, in young children with fevers.
Unfortunately, Ryan's seizures continued even with the addition of daily anti-epileptic drugs (AED). After his third AED failed, it was recommended that Ryan be tested for a genetic mutation common in some forms of childhood epilepsy. Six months after his first seizure and weeks shy of his first birthday we learned that Ryan's disorder was far more than ordinary.
Our family has been living with epilepsy and now we are ready to share our story in the hopes of raising awareness and financial support to combat this disease.
Ryan has been so brave and is such a joy and blessing in our lives. We wanted to take this opportunity to support him in his fight against epilepsy.
Unfortunately, as I write this in early 2010 we are still struggling to control Ryan's seizures. A simple ear infection in the Fall of 2009 brought on several seizures. A trip to a local arcade/pizza place resulted in a status seizure requiring emergency intubation and hospitalization. Now that Ryan is older and walking we are also seeing seizure-related injuries -- "Baby's First Concussion" is not a milestone we wish to recognize.
We're seeing more frequency but less severity in the seizures. EVERY SINGLE SEIZURE puts Ryan at risk for injury or worse.
Fortunately, Ryan's development is for the most part on par with other children his age and he is full of love and laughter. He enjoys music and a good lightsaber fight with his big brother Jacob. He's a great hugger, a big fan of Dora and Diego, and if you pretend to sleep... he'll kiss you awake.
We wish only the best for him, and hope that in time we'll be able to control his seizures so that he can enjoy a full, independent and productful life.
Sadly, that trip and much of 2008 did not turn out as planned. While in California Ryan had his first seizure at 5 months of age (lasting over 45 minutes) and spent "Baby's First Christmas" in the PICU at UC Irvine.
At that time we were told his seizure was likely a complex atypical febrile seizure and that seizures were common, and benign, in young children with fevers.
Unfortunately, Ryan's seizures continued even with the addition of daily anti-epileptic drugs (AED). After his third AED failed, it was recommended that Ryan be tested for a genetic mutation common in some forms of childhood epilepsy. Six months after his first seizure and weeks shy of his first birthday we learned that Ryan's disorder was far more than ordinary.
Our family has been living with epilepsy and now we are ready to share our story in the hopes of raising awareness and financial support to combat this disease.
Ryan has been so brave and is such a joy and blessing in our lives. We wanted to take this opportunity to support him in his fight against epilepsy.
Unfortunately, as I write this in early 2010 we are still struggling to control Ryan's seizures. A simple ear infection in the Fall of 2009 brought on several seizures. A trip to a local arcade/pizza place resulted in a status seizure requiring emergency intubation and hospitalization. Now that Ryan is older and walking we are also seeing seizure-related injuries -- "Baby's First Concussion" is not a milestone we wish to recognize.
We're seeing more frequency but less severity in the seizures. EVERY SINGLE SEIZURE puts Ryan at risk for injury or worse.
Fortunately, Ryan's development is for the most part on par with other children his age and he is full of love and laughter. He enjoys music and a good lightsaber fight with his big brother Jacob. He's a great hugger, a big fan of Dora and Diego, and if you pretend to sleep... he'll kiss you awake.
We wish only the best for him, and hope that in time we'll be able to control his seizures so that he can enjoy a full, independent and productful life.
Ryan gets a helping hand from his Big Brother!
