Dear Friends and Family,
This year we are walking for our friend's daughter Paige. Paige and her family had the opportunity to enjoy Disney this year as part of the Make-A-Wish Foundation. Paige was diagnosed with Dravet Syndrome when she was 8 months old and now at the age of 6 she has earned the title of Princess Warrior!
Here is Paige's story as told by her mom Kristina.
This is my beautiful daughter Paige, otherwise known as the Princess Warrior. She is very deserving of the ‘warrior’ title as she has been through more in her 6 years of life than any adult should ever have to endure.
At 6 months of age, she had her first seizure has never gone a day seizure free since. She has numerous types of seizures: tonic clonic, clonic, myoclonic, atonic, absence, and complex partials. At 8 months of age, through genetic testing, she 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 which occurs in roughly 1 in every 20,000-40,000 births. She will never outgrow this condition and it affects every aspect of her daily life, along with our family's as well.
It 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 also face a higher incidence of SUDEP (sudden unexplained death in epilepsy).
Paige’s development remained on track initially, and then declined significantly at 19 months. This is when she had a status 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, eat, or even swallow. It has been 4 years since the surgery, and I happily report she has learned to walk again, but has remained nonverbal. She now attends therapies on a regular basis and continues to show us how resilient she is.
We hope you are as inspired by the Princess Warrior as we are and you consider donating to the Make-A-Wish Foundation!