Today Mark, Dani, Ella and Drew are one of two featured families at the walk. A few days ago, a letter from Danielle appeared as an invitation for the Winter Walk, and I thought I'd share it with you. I apologize that the fond goes larger and smaller, etc. This thing has a mind of its own sometimes.
Epilepsy was a condition that had no meaning in our family until December 2, 2004. On that day we witnessed what would be the start of a long, hard, and scary journey. Our daughter Ella, who was 6 months old at the time, had her first seizure. This single moment changed our lives forever. This once foreign condition became something all too familiar to our entire family.
Our sweet Ella is now 10 years old. Over the years she has had thousands of seizures which lead her to endure multiple ambulance rides, hospital stays, medical tests and procedures, and blood draws. For the last 10 years we have tried everything to make Ella's seizures stop: multiple cocktails of medicines, the Ketogenic Diet, and surgical options. Epilepsy is a frustrating conduction because after everything Ella has endured we still don't have a definite cause of her epilepsy and her seizures continue to be uncontrolled.
Ella suffers from several different types of seizures: grand mal, partial
complex, and absence seizures. Her seizures have been as short as 1-3 seconds
and have gone as long as 90 minutes. Ella began her life developing as a normal
child, now, unfortunately, after so many seizures and years of them being
uncontrolled, she has developmental delays and permanent changes to her brain.
As a result, she will always need our care.
Despite all she has been through, Ella remains a happy, loving young girl. When
times get tough, we all try to remind ourselves of her strength and we are
thankful for every day she is a part of our lives.
We need to continue to raise awareness and funds to assist those who live with this challenging condition. Seizure disorders affect thousands of people and it does not discriminate against age, sex, or race-it can affect anyone at any time.
We are so proud to be one of the 2015 Winter Walk Featured Families; and we are walking on Saturday, January 31 for our daughter, Ella, and other who are living with epilepsy. We hope you'll join our family and help us fight to raise awareness and funds for this condition. Our hope is that one day there will be a cure and kids will be able to live a life without the fear of having a seizure.
We
look forward to seeing you at the 10th Annual Winter Walk!
Sincerely,
The
Tarle Family
Let me note that the other day I saw a small article in the Beacon Journal. The category that medical marijuana used to occupy made it difficult to get funding for research. Thankfully, due to the outpouring of letters and communication from families whose children have uncontrolled seizures made the government take another look at it and medical marijuana was moved to a category that will allow for much more exploration. Believe me when I say that this could be a blessing for Ella!!!
Have a great day, everyone.
Karen
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