Melissa Wells via Crowdrise
October 17, 2011
BENEFITING: CHILDREN'S HEMIPLEGIA AND STROKE ASSN.
EVENT DATE: Oct 30, 2011
I run for lots of reason. Most days that I hit the ground running I do it simply because I enjoy it. That simple joy might get me out there, but in all those moments I am alone on the road, I have a lot of time to think about the people and things most important to me. Being a healthy role model is one of those things, especially to my children. Hearing Jackson tell perfect strangers that he "ran 6 miles today" fills me with pride and laughter. With every mile I run I feel that I remind myself more and more how blessed I am to be healthy and able.
As many of you know, a lot of my family lives in Georgia. I spend a lot of time while I am running thinking about how they are, what their lives are like "down south," and how much I miss every one of them. My niece Samantha Marie (Sammy) is on my mind often, as I think about the struggles she has overcome and the amazing little girl she has grown into.
Here is Sammy's story taken directly from my sister's personal fundraising site for CHASA (Children's Hemiplegia and Stroke Association)
"Before Sammy was born we had no idea kids, babies, and even unborn babies could have strokes! Sammy was born a happy, healthy baby girl. She weighed 6lbs 6oz and was 19 inches long. She was perfect! She seemed to be developing right on track! That was until about 5mos when we started to notice that she wasn’t ever using her right hand and it was always just there in a little fist. It wasn't until about 7 mos. when we really started to worry about it. She couldn't roll over or sit up at all either. We made an appt. with our pediatrician and went over our concerns. He gave us numbers for both early intervention (EI) and a neurologist and told us to call them both. We sort of put off calling the neuro. thinking nothing could possibly be that wrong with her, she was fine. So we called EI and they came out to do an evaluation. They said there was definitely something wrong and we should make an appt. with the neuro. We called the neuro. and got a referral and scheduled our appt. for about a month later. All we kept thinking is that this neuro. appt. was going to be a waste of time. Nothing was wrong with her. One of the very first things the neuro. said to us after evaluating her, was I think she had a stroke. Our jaws dropped and our hearts sank. How could this be? We thought strokes only happened to "old' people.
We then scheduled an MRI to be sure it was a stroke and not something else. The MRI was nerve racking. I had just found out I was preggo with my youngest at the time and couldn't go in the room with my Sammy! She had to go under anesthesia so that she would lie still during the scan. We were so nervous about it all! A few days after the MRI we got a call from the neuro. to come in. At the apt he told us that Sammy had indeed suffered a stroke, probably in-utero, right around 7 mos. gestation. Our world from that day has changed forever! Sammy has been officially diagnosed with hemiplegic cerebral palsy. She has spastic hemiplegic cerebral palsy and it affects her right side of her body. The spastic muscles make it very difficult to move them. Sammy started receiving OT, PT and ST around 8 mos. old. She learned how to roll over and sit after about a month of therapy, around 9 mos. old. She learned to crawl right after her first birthday and started cruising along furniture shortly after that and she started walking at 17 mos.
When Sammy was 21 mos. she suffered her first (noticeable) seizure. She seized for over 45 minutes while my husband drove like a mad man to the hospital. They finally stopped the seizure with Dilantin. After a few day stay at the hospital, she was put on Depakote to keep her from having any more seizures. After a few visits with the neuro. following that she was weaned from Depakote and put on Lemictal. Sammy has been on Lemictal (Lamotrogine) since then and her seizures have been pretty well controlled. She has had several EEG's and a few breakthrough seizures, which usually just mean she has grown and needs to increase the amount. The neuro. believes she will probably remain on anti-seizure medicine for life.
At 3 years old Sammy left the EI program to move up to the special needs pre-school program offered in the public school system. She has been attending the public school by us since then. Today Sammy is in a regular Kindergarten class (with support) and is getting ready to move up to the first grade! She still struggles with the use of her right arm/hand usage and some learning difficulties (particularly with retaining new information and memory retention) and she walks with a little bit of a funny gait, which is more noticeable when she runs. She struggles with some common daily tasks such as fastening a button or zipping up a zipper, but she can do it and she gets better at it every day! She is no different than any other kid! In fact, most people we meet are always surprised to learn that there is anything different at all! We understand how lucky we are and believe that Sammy is our little miracle!"
Will you consider pledging a monetary donation for my marathon in honor of Sammy? Maybe a dollar for each of the 26 miles I will run? Maybe $10 is all you can afford . . . that is still $10 towards making a difference that could save lives. Even if you can’t donate anything at all, I thank you for taking the time to gain awareness and read about Sammy's story.
CHASA (CHILDREN'S HEMIPLEGIA AND STROKE ASSOCIATION) is the first international non-profit organization to offer information and support to families of infants, children, and young adults who have hemiplegia or hemiplegic cerebral palsy, often due to perinatal stroke, childhood stroke, or other rare causes. Please visit this link to learn more: http://www.chasa.org/hemiplegia.htm