As normal, this post was written way back when...I've had issues either getting pictures from the event or transferring them to my computer to upload to my blog...I totally apologize for the delay.
Last night was the first ever fundraiser in Alabama for Rett Syndrome. It was a Strollathon. It was held at Hoover High School. A ton of blood, sweat, and tears went into making this event what it was. Before I go on and on about last night, I want to fill you in on Rett Syndrome and why its so near and dear to me (even though I'm sure most of you already know-the more its spoken about, the more awareness it brings).
Please ignore the kid in the window!!!
Rett Syndrome (RS) is a development disorder that occurs mainly in girls. It is caused by a genetic mutation which occurs at the time of conception. A child with RS is usually born healthy and develops normally until 6-18 months of life, when there is slowing or stagnation of skills. A period of regression follows when she loses communication skills and purposeful use of her hands. Soon, stereotyped hand movements, gait disturbances, and slowing of normal head growth become apparent.
Other problems that RS girls may encounter in their lifetime include: seizures, disorganized breathing patterns, swallowing difficulties, sleeping disturbances, and gall bladder problems. The greatest handicap in RS is APRAXIA, the inability or difficulty to program their body to perform motor movements. This difficulty interferes with every body movement including eye gaze and speech, thus most do not speak. RS occurs in 1:10,000 female live births and is often misdiagnosed as autism, cerebral palsy, or non- specific developmental delay. It is diagnosed with a simple blood test along with meeting the diagnostic criteria.
This brings me to Sarah Katherine Bateh. My #4 of 5 nieces. Sarah Katherine, my niece, was diagnosed with Rett Syndrome on November 3, 2011 by Dr. Alan Percy, a world-renowned Rett Specialist here at UAB. She had just turned two years old. She is walking independently, has limited use of her left hand and makes great eye contact. She is a walking example of the impact of prayer. To hear her laugh is like no other sound in the world. Sarah Katherine, known as Suki, has taught me more in her almost 3 years of living than most teach me in a lifetime. I'm not going to even attempt to name everything she's taught me, but the most important one of all-she has taught me to never give up on my faith in God. Even when things seem to be at rock bottom or when I'm totally frustrated with life or Phoenix-I think of her and I always seem to land on my knees right where I need to be. Thank you for that Suki. Her teachings continue on a daily basis. She is constantly teaching me about compassion, patience, understanding, thinking outside the box, and so on and so on. Truly, I cannot say enough about this little girl. And words don't do her justice anyways. I think that might be one reason why she may not care to speak-she knows her impact of silence is way bigger than her words
will ever be. She simply is amazing.
Speaking of amazing. She has the BEST 4 sisters in the world. Well, Julia(11mths) doesn't really count at this point, but I have no doubt in my heart she'll be just as loving, caring and guiding towards her as her others are. Anna (8), Abbie(7) and LuLu(4 1/2) dedicate their days to making sure their sister has what she needs and is safe in her surroundings. The amazing part is they do it because they love her-not because they feel like they have to. Never do they complain about it or her. They always look out for her best interest even before their own. Their selflessness definitely gives me a reality check and gives me something to strive towards. We learn from what we witness, and thats exactly where these girls have learned how to care for Suki. Marie, my sister, has dropped everything in her world to dedicate all her time to Suki. Be it taking her to all her therapies, attending conferences, working with her at home, she is always striving to help Suki. And someway, somehow, she STILL manages to care for 4 other children (to and from school, after school activities, field trips, volunteering in classrooms, and an 11mth old who refuses to sleep through the night) and a husband. Oh-and she has dinner on the table each and every night! I honestly don't know how she does it day in and day out. Spending time with her makes me strive to be a better person. Now Brian, he too does anything and everything to accommodate and help Suki reach new goals. Works during the day and comes home to a house of 5 women. That alone is tough!
Can't believe I don't have a picture of LuLu or one with Brian...Sorry guys :(
Okay, back to the strollathon. Remember, this was the FIRST ever fundraiser here in Alabama for Rett Syndrome. I think there was a total of a little 300+ people that came out to show their support. Of that number, 101 of those were TEAM SUKI members!!!! How fantastic is that!!!! If that number alone doesn't say how loved this child and her family is, I don't know what does! They, as we all are, are truly (I mean to the deepest degree of true) blessed to be surrounded by such selfless people. The event brought in close to $10,000. Can you believe it! It was a HUGE success! Marie wasn't content with the event itself-go figure-and decided to hold a bake sale at the event. We pulled together and with the help of some seriously amazing people got it done. The bake sale brought in $445.00. I'm still in shock over the generosity of everyone.
That brings me to my next important point of the event. The supporters. Whether it was through a monetary donation, a baked good, a walk around the parking lot, a prayer, a past donation, or a simple thought. It all matters and it goes without saying that without each and every member of Team Suki this, nor any other event would be half of what it is. Suki would not be making the progress she is able to make nor would the family have the faith, hope and encouragement they have. My heart swells just thinking about the Blessings that surround the Bateh family 24 hours a day 7 days a week 365 days a year. Words will never be able to adequately describe what it means to our family. I just pray that each of you realize the impact that you are having not only on Suki and our families but to the world as a whole. Each and every one of you make the world a better place. I truly mean this from the bottom of my heart-thank you and I love each and every one of you for what you are doing for my niece and for making me a better person.
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