I just wanted to take this time to respond to Epilepsy Awareness Month and Kaitlin’s efforts to spread awareness. I have had the pleasure of watching and reading as all of this evolved over the past year and feel so good that it has reached the point it is today. I have learned very much from reading this blog and now the web page and even facebook posts. This has truly been an enlightening experience for me.
First of all let me introduce myself, my name is Tony Elhajj. I have known Kim for the past 3 years when she was first assigned to my daughter’s case to take over as her nurse. My daughter has Rett Syndrome which involves seizures as well as many other impairments. My first impression of Kim was, here is a person who will make a difference and get the job done.
I would have expected nothing less then what she has put together for epilepsy when her own daughter was diagnosed. The information posted here comes from the heart and shows a true passion for dealing with this disorder. Kim not only researched information for herself and her daughter but felt the need to share all this valuable information with as many others as possible. She chooses to do this through a blog and web page. The design and creativity of it all makes the readers of this information comfortable and willing to read more. The information is well thought out and intended to inspire and raise awareness. Someday, someone will find a cure and maybe this site will lead that one person that finds that cure.
In my own personal battle for a cure for Rett Syndrome, I find that we as parents of children affected with diseases MUST lead the way to finding the cure. If not us, then who! We are the biggest advocates for our children. If no one will listen then we will make them listen. We will find a cure and hopefully we will do it quickly.
I have been on many teams in my life. Some were championship teams, some not as good but ALL had one thing in common. Determination! I see a championship team here. I feel the passion. I can’t tell any of you apart because you all have purple ribbons with a name written on the ribbon in white… you are all fighting the same battle. You are united and believe!! This is how it will get done! Let’s bring epilepsy out from the shadows … For the sake of our kids!
Kaitlin's Cauze would like to thank Mr. Elhajj for today's post. We would also like to say thank you for allowing us to "borrow" some of the ideas used for Rett Syndrome Awareness.
ReplyDeleteI, personally, would like to thank Tony for his patience over the last 2 years and putting up with my "reminders" of when to give Kaitlin her medicine and what to look for as far as her seizures. Kaitlin is best friends with Tony's oldest daughter and spends a lot of time at their house. I would also like to give a shout out to Tony's daughter, Riley- who recognized a seizure with Kaitlin and did all the right things that afternoon. Not only did Riley recognize a complex partial seizure, she stayed with Kaitlin and kept her safe until she was able to alert her dad who was inside their house. --Kim
ReplyDeleteHi, I'm Michelle and I have complex partial seizures, but it doesn't stop me from going for my dreams. I'm a US figure skater training for next years Regionals and I'm proud of who I am.
ReplyDeleteGetting there hasn't been easy for me! Many Of times i forget and lost my jumps, or have to overcome side effects from medicine.
For many years I had to overcome many other obstacles with my health! I had to have surgery on my bladder and lost half of my kidney. Many infections which brought on many seizures. But now as I get older I'm fighting to over come what life brings me.
Skating has been therapy for me! Staying busy was the answer for me! I love to skate, it makes me feel free, alive and normal. I practice 5 days a week with 3 coaches. I have won a few gold metals in Florida and I plan on going to 2012 Regionals. I will never let my seizures take over my life. I have Epilepsy, Epilespy doesn't have me. Look for me in a up coming book called ( Still Skating Forward ) it's about skaters who have different conditions. There will be a chapter about me and having Epilepsy and competing in Figure skating.
Michelle..www.michellebohning.com
Thanks for sharing this, Tony! Inspiring, indeed! Kim IS a wonderful person, who IS making a difference, along with Kait! Faith, hope and love... That's what it's all about! :)
ReplyDeleteDarcy~