SHIRTS FOR SALE!!!!!

We are so excited to announce that we, along with the Ridge View Boys Basketball Team, are now selling t-shirts to raise money in HONOR OF Kayla Reese for 'Madison's Foundation' (http://www.madisonsfoundation.org). There is also a link on the right side bar. 100 percent of all t-shirt sales (after t-shirt cost has been paid) will go toward this worthy foundation which is dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening disease. They also work to facilitate effective communication among parents, physicians and medical experts. As Michelle and Gregg would tell you, information about Tetrasomy X is scarce. To have an organization that connects you with other families whose child has received a similar diagnosis is a God send. Having a child diagnosed with such a rare disease can leave you feeling alone and in the dark. But, Madison's Foundation is dedicated to connecting families and helping them walk the hard road that can come with such rare diseases.

Our ultimate goal of starting our own foundation for Kayla Reese is still alive! The process of starting a non-profit organization will take time but we know it will happen! This is only the beginning. So please show your support and purchase a Kayla Reese t-shirt. Check out the right side bar for all the information. Thank you all for your support. This wouldn't be possible with out you!

Susan

Keeping Up With the Jowers...

MICHELLE SAID....

I know it’s been a while since our last update…my apologies for that! Our family made a big move to Chapin last week so it was crazy but we all have a place to sleep and a place to eat now so I consider that progress! It has also been an eventful few weeks for Kayla Reese! In late May we finally had the opportunity to meet with the geneticist and were eager to hear what she had to say. Honestly it was pretty uneventful…because Tetrasomy X is so rare, everything she had to tell us was straight from literature she had read…the same stuff we had already read! We talked a lot about her potential learning difficulties, her need for further tests such as an echocardiogram, renal ultrasound and vision screening, as well as hormone challenges she may face. The geneticist said she had never seen a case of Tetra X before but was going to work with us and follow us for the rest of Kayla Reese’s life. In addition to the geneticist, we also had to take Kayla Reese to the hospital twice…the poor child knows the hospital all too well! The first trip was for sedation for an MRI of the brain. A few days later we visited the neurologist for those results which were fair, not great, but not horrible. He said her brain was not growing at quite the rate it should, and that there wasn’t as much fluid flowing as she needed. BUT it wasn’t so severe that he saw a major issue with it. The plan is to repeat the MRI in December to see if there are any changes and go from there. The week following the MRI we took her back to the operating room – this time to get her adenoids removed, ear tubes replaced, and a hearing test which actually tested her hearing through the nerve in her bone. Surgery went well and hearing test results were pretty good too. The nerves in her bones were functioning perfectly, but she does have some conductive hearing loss, more in her left than in her right. I am waiting for the follow up to find out exactly what she can and can’t hear, but knowing her nerves are great is fantastic news!

Enough medical stuff for ya’? Kayla Reese is really progressing well. Just in the past few days we have seen her bear weight on her arms and even try to move her knees in the crawling motion!!! VERY exciting news!!! We’ve also discovered she LOVES the water and it is good therapy for her legs, so the doctor says mommy and Kayla Reese MUST hang out by the pool all summer! (wink wink!) Otherwise, we are busy working to find therapists in our new town to cover speech, physical and occupational therapies. The good Lord has already provided us with a wonderful Speech Therapist and I trust in Him more good therapists are in our future. We are also waiting on dates for her big tests – the echocardiogram, renal ultrasound and vision screening. I’ll keep you posted on those dates as they draw near – prayers are always welcome and greatly appreciated! Oh, and prayers that I will actually be able to run the 13.1 miles this half marathon requires would be nice too! John and Susan are kicking my TAIL!!! But wow, what an inspiration they are!!! And don’t forget to buy a shirt! Can’t WAIT to see them all over town!!! (DETAILS COMING SOON!)

Just Around the Corner

It's so hard to believe we only have about 6 weeks before the half-marathon in Chicago! This Saturday, I'll be running 11 miles as part of my training for the half. This is the most I'm going to run before I hopefully cross the finish line in Chicago after running 13.1 miles! So, I'm at my peak of training, which is really exciting! If I can run 11 miles, Saturday, I feel confident that in a race, I can finish 13.1. I just read over that sentence and can't belive I would ever be able to say something like that!

So many people have asked me over the past few weeks how I can run the distance of a half marathon. Believe me when I say, if I can do it, so can you. I am not an athletic person. God did not create my body in the image of a runner. I have flat feet with absolutely no arch (I tend to run on the sides of my feet b/c of this). Only very expensive shoes help my feet have the appropriate support for running a half marathon. If I keep up this marathon running thing, Strictly Running will be able to expand their business!

Also, I 'practice' my running A LOT!. I've been training since February and I assure you it has taken me all that time to 'practice' and get to the running distance I am now. Finally, I have a goal and that is helping Michelle and Gregg raise awareness about Kayla Reese and Tetrasomy X. I plan to post in the very near future about all it's going to take to help start a foundation to fund research for Tetrasomy X. So, keep checking back. There will be many opportunities for you to help in this venture!

Susan

John's 'Country Chronicle' column

Many of you may already know, but John (my husband), writes a weekly column about 'all things running' and our goal of running a 1/2 marathon. Each Thursday, the column is in our local town paper, 'The Country Chronicle.' I know many of you who follow this blog, may not live in our town, so, below is his column for this week. Enjoy!

About the hardest thing my wife and I have done in preparing for the half marathon has been selecting a worthy cause to run in support of. There are a number of different worthy causes we considered and we had the most difficult time choosing one over another. Then very suddenly it became extremely clear what our purpose and mission for running a half marathon would be. Michelle and Gregg Jowers are long time friends of our family and they have three beautiful daughters. Very recently they found out their youngest daughter, Kayla Reese, who just celebrated her first birthday, has an extremely rare chromosome abnormality called Tetrasomy X—also known as Tetra X. The chromosome abnormality is so unbelievably rare that there are only about 100 known cases worldwide. To put it in perspective one in 68 million people on this earth is known to have this chromosome abnormality.

Kayla Reese, who is an extremely precious little girl has the only known case of Tetra X in South Carolina. There are only 60 cases in journals worldwide to for doctors to even read about. The few case studies that exist explain the symptoms of Tetra X can range from mild to severe, but include motor and speech delays, hypotonia, vision and hearing problems, difficulties learning, below average IQ, heart, kidney, and ovary defects to just name a few of the issues associated with this abnormality.

Needless to say, the Jowers were shocked and saddened by news of their baby girl having Tetra X. There are many aspects about Tetra X that are tough to deal with, but since it is so rare there is so little information known about how to treat it. Michelle, after taking in her child’s diagnosis said, “after wallowing in my own self pity, I bucked up, put on my big girl panties and boxing gloves and am gonna fight for my sweet baby girl! At no time did anyone say she ‘can’t’ do something, so my view is that Kayla Reese can do anything she wants to and I am going to give her every tool I can to give her every chance possible.” We are excited that Michelle is going to join my wife and myself in running the Chicago Rock ‘n’ Roll Half Marathon in August in support and for the love of Kayla Reese.

Our first goal of running “For the Love of Kayla Reese” is to bring awareness to people about Tetra X. We will bring you information soon on how you can support the cause we are running to support. Please visit our blog at: http://www.race2chi-town.blogspot.com to learn more about Kayla Reese’s story and our experiences in preparing for the half marathon.

Heart and Sole 5 Mile Race

Here's a clip of me (Susan) at the finish line at the 'Heart and Sole' 5 mile race today! It felt so good to cross that finish line! I finished in a little over 54 minutes. Check back later for pictures of me and Michelle along the course!

FOR THE LOVE OF KAYLA REESE.....

John and I are absolutely thrilled and honored to let you finally know our RUNNING CAUSE. What you are about to read in the paragraphs below is written by one of my dearest and closest friends, Michelle Jowers. Her family is such an inspiration to us and will be to you too.

MICHELLE SAID.....
Ten years ago, THIS YEAR, I married the love of my life and high school sweetheart, Gregg. We dreamed of having children..how many...what their names be...and I always thought I’d end up with a house full of boys. Turns out, we were blessed with three GIRLS! I know, my poor husband! Aislyn was our first child, and boy was she a challenge...not only at birth weighing in over 10 pounds, but even after that. She had some sensory issues which weighed heavy on my heart. I was told giving her a sibling would be the best thing for her, so we did and that’s when Blythe came along! She’s the boy I will never have! Easy baby but a busy preschooler! We felt so incredibly happy, but still felt like our family wasn’t quite complete. "Just one more"...I can remember saying to Gregg praying he’d agree - and he definitely did!

Just over a year ago, Kayla Reese joined our loving family. We thought about just calling her Kayla, but it didn’t seem to fit this unique child...so she is known in our house as ‘Kayla Reesy’ or ‘ReesyPiecy’! I was induced with Kayla Reese two weeks early because of my history of large babies. Everything was normal during delivery, and we were handed a small, in our eyes at least, baby girl with jet black hair and dark, Asian shaped, eyes. She was a beauty to say the least. Within the first two weeks I knew something was different about her. I vividly remember telling a friend, I felt something wasn’t right and wondering if we had induced too early. BUT she was here now and healthy and I didn’t want to question too much. As time passed, especially around 4-5 months when she wasn’t rolling over at all and she was always sick, I began what I call, my mission. I was on a mission to figure out what was causing her delay and to pinpoint what my gut was telling me was a problem. At six months I had a child who was not rolling over or even thinking of sitting up. My friends, family, and even pediatrician excused this saying she was a third child and would do things when she felt like it. I shook my head in agreement not wanting to confront anyone but knowing inside it was just an excuse. At a sick visit for one of my other girls, I told my pediatrician I wanted to start looking into Early Intervention services for Kayla Reese. He was hesitant but agreed it wouldn’t hurt. Shortly after that she was evaluated by a Physical Therapist and an Occupational Therapist and it was determined she was severely delayed in the areas of both gross and fine motor skills. This is where our life of therapies began. Kayla Reese had tubes placed in her ears at 9 months of age due to chronic ear infections, and at that time we discovered she has some sort of hearing loss. We are scheduled for another trip to the operating room so we can have her hearing tested further to see the extent of the loss and what she will need to correct it...or at least help her hear better.

The real discovery into Kayla Reese, came after her one year well checkup at the pediatrician, where he agreed we could no longer use the third child excuse and it was time to investigate further. He sent us to a neurologist who set us up with an MRI and some detailed bloodwork. The only hint I had from anyone was maybe she had a stroke in utero that caused her delays - but that she may have ‘something’ or ‘nothing at all.’ Honestly I thought the bloodwork would come back normal but we’d find something from the MRI. One week after the bloodwork came back, my pediatrician called me with the news....Kayla Reese has an extremely rare chromosome abnormality called Tetrasomy X. So rare, there are only about 60 cases in literature and 100 cases worldwide. The few case studies that exist show the symptoms of this can range from mild to severe but include motor and speech delays, hypotonia, vision and hearing problems, difficulties learning and a below average IQ, heart, kidney and ovary defects, behavioral issues, and the list rattles on. Needless to say we were in shock. Lots of tears were shed and dreams broken. But after wallowing in my own self-pity, I bucked up, put on my big girl panties and boxing gloves and am gonna fight for my sweet babygirl! At no time did anyone say she ‘can’t’ do something, so my view is that Kayla Reese can do anything she wants to and I am going to give her every tool I can, for her to have every chance possible.

Our life, much like everyone’s life with children, is we will have to wait and see. We’ll have to wait and see if she’ll walk before age 5....wait and see if her teeth will ever grow in...wait and see how much support she’ll need to blend into mainstream schooling...wait and see if the MRI is clear....wait and see if she has organ defects...wait and see if she will go into puberty on her own...wait and see if she can live independently or live with us forever....wait and see if she can form relationships...just wait and see where life’s long and winding road will take us. But right now I know this child will NOT have to wait to feel loved or blessed because she is a JOY to us and is a GIFT and a BLESSING to us and everyone she meets. So come on life...BRING IT ON!!! We can handle it.


SUSAN SAID....
Through our running a half-marathon, blog and fundraisers, we are hoping to raise money to help Michelle and her husband, Gregg, donate money or create a foundation in Kayla Reese's name. If a foundation is created (and we hope this happens), our goal is to raise money for more research and help families with gaining information about this and other rare chromosome abnormalities. We are in the EARLY stages of making this idea and dream happen. If you have any fundraiser ideas, we are all ears. Also, if you have any information on starting a foundation, we would love to hear those ideas as well.

So, stay tuned and keep checking back! This is going to be an AMAZING journey and the more on the ride, the better!

Susan

Happy Early Mother's Day.....SHE SAID

It's almost overwhelming to think about all the blessings in my life. I have such a close family, great friends, loving husband, but most of all two beautiful, healthy, happy, little girls. It really brings tears to my eyes to think about it all at once. Mothers Day is such a special day. But, I really think I took it for granted until last year. Even after having our first daughter, Mary Anne, Mother's Day, was a fun day to get together with family, receive gifts and get pampered. But, last year, it took on a whole new meaning.

You see, in July 2007, when Mary Anne was almost three years old, I miscarried early in a pregnancy. After having one child, I truly realized what I was losing. I was losing a baby, a life, a sibling for Mary Anne, a baby girl, or possibly our little boy. That experience forever changed me. It was a 'bring me to my knees' experience. I always felt like I had control over everything. I COULD get pregnant, I COULD do everything right and carry a healthy baby, I COULD deliver a baby without complications. But, my miscarriage taught me a lesson. I am not in control....God is. And what a relief that is!! To know I don't hold everything in my hands. To know there is a God who is looking out for me and has my life planned. To know there is a God who brought good out of pain.

And you probably ask, what good came from that????? Well, she's about 20 lbs, crawls on all fours, only has four teeth, gnaws on everything in sight and goes by the name, SARAH GRAY! How can I not trust in God and love him when he gives me something as wonderful as my two girls?!?! So, Mother's Day is very special to me. It means more to me now than it ever did because I know what blessings I have in my life. Take a look at the video below....makes me cry everytime.

Oh, and you're probably wondering about the running thing....it's going well! I'm running more and more and am supposed to run 6.5 miles this coming Saturday! If you think about it, that's 1/2 of a 1/2 marathon! I hope you all have a great Mother's Day and I promise I won't wait so long to write another post!