Paige inspires her team to come in first.  Click here to support Team Paige

Editor’s Note:  On January 18, 2014 the Epilepsy Association will host the 9th annual Winter Walk for Epilepsy.  The 2-mile walk will be held simultaneously indoors at the Great Lakes Mall  in Mentor and the Southpark Mall in Strongsville. Our passion is to raise epilepsy awareness and one way we do this is by sharing the stories of living with epilepsy.  Here is the wonderful story of Paige Frate submitted by her mom Kristina.

I am sharing my daughter Paige’s story to increase awareness of epilepsy and to encourage your support of the 2014 Winter Walk for Epilepsy.

Paige was born on August 18, 2010.  At 6 months of age, she had her first seizure which was associated with a fever.   During the next two months, additional seizure types developed: clonic, myoclonic, absence, and complex partials.  At 8 months of age, through genetic testing, Paige was diagnosed with Dravet Syndrome. It is also known as Severe Myoclonic Epilepsy of Infancy (SMEI), which is a rare and catastrophic form of intractable epilepsy occuring in roughly 1 in every 30,000 births.  She will never outgrow this condition and it affects every aspect of her daily life, along with our family’s as well.

SMEI is a progressive disorder characterized by multiple seizure types that are resistant to treatment, often including life-threatening status epilepticus.  Earmarks of the syndrome include behavior and developmental delays, lowered immunity, chronic infections, delayed speech, sleeping difficulties, orthopedic concerns, and hyperactivity to mention a few.  In addition, children with Dravet face a higher incidence of SUDEP (sudden unexplained death in epilepsy).

Paige’s development remained on track initially, then declined significantly at 19 months.  This is when she became extremely ill with RSV, had a 67 minute seizure, her heart and lungs shut down, and emergency ECMO surgery was performed.  The surgery saved her life, but caused her to have a stroke.  She lost the ability to walk, talk, and eat.  It has been 18 months since the surgery, and I happily report Paige has learned  to walk again and can feed herself.  Her speech is significantly delayed, but she is making tremendous progress.  She attends therapies on a regular basis and continues to show us how resilient she is.

Paige’s Dravet impacts every aspect of our life.  The care she requires is intense.   • She requires high doses of medicines which are time regimented medicines.  (She currently takes 8 doses a day which are just her seizures meds.) • We try and maintain her body temperature.  She is ultra-sensitive and if her temperature rises above 99 degrees, she will have a grand mal seizure.  Therefore, we use a cooling vest.  • She cannot be exposed to direct sunlight.  We keep protective gear on her when outside. • She cannot be in a stressful environment. • We ensure Paige receives ample rest to eliminate sleep deprivation.  • It is of upmost importance to limit her exposure to illness.

My mission in life is to educate others on this spectrum disorder and type of epilepsy.  As a family we are dedicated to raising money to increase Epilepsy Awareness.  This is why I encourage you to support the Epilepsy Association Winter Walk and TEAM PAIGE.  We’ll be at the Mentor walk and hope to see you there.

Sincerely,

Kristina Frate – mom to Paige, the Princess Warrior