We're so excited that Kayla Reese's story will air on WIS-TV here in Columbia TONIGHT @ 6 pm. Thanks so much to Kara Gormley for doing this story. Our hopes are to gain exposure for 'The Kayla Reese Foundation' and Tetrasomy X. It may sound crazy, but non-profit organizations take money to start and maintain. So, we're hoping exposure will help 'The Kayla Reese Foundation' raise enough funds to really get up and going and fulfill our intended purpose. So, pull up a chair tonight at 6:00 and watch Kayla Reese or be sure to set your DVRs so you can watch it later! Thank you for all your support!
Susan
Thursday, July 23, 2009
Monday, July 13, 2009
Good News and more good news!
Thanks to all who bought a Kayla Reese/Race 2 Chi-town t-shirt. This was our first fundraiser and it went really well. Our goal was to sell 50 shirts and we ended up selling 53! Not too bad!
Also, we are officially a foundation. Yep, you heard right, we are now 'The Kayla Reese Foundation.' How awesome is that??? But, now for the hard (and expensive) part. We want The Kayla Reese Foundation to be a 501(c)3 or non-profit organization. The biggest thing about becoming a non-profit orgnaization is the fact that when people or businesses donate to us, they can write it off on their taxes....a big plus! To become a non-profit is going to take more time and of course, money. But, we're working on it and will keep you updated on our progress and future fundraisers!
Thanks again to all who ordered shirts this first go 'round. It has been such a good feeling when someone orders a shirt because you realize they have faith in what we're doing and I just can't put into words how grateful we all are. If you ordered, your shirt will be delivered or mailed to you this week (week of July 13).
Keep checking back for updates!
Susan
Also, we are officially a foundation. Yep, you heard right, we are now 'The Kayla Reese Foundation.' How awesome is that??? But, now for the hard (and expensive) part. We want The Kayla Reese Foundation to be a 501(c)3 or non-profit organization. The biggest thing about becoming a non-profit orgnaization is the fact that when people or businesses donate to us, they can write it off on their taxes....a big plus! To become a non-profit is going to take more time and of course, money. But, we're working on it and will keep you updated on our progress and future fundraisers!
Thanks again to all who ordered shirts this first go 'round. It has been such a good feeling when someone orders a shirt because you realize they have faith in what we're doing and I just can't put into words how grateful we all are. If you ordered, your shirt will be delivered or mailed to you this week (week of July 13).
Keep checking back for updates!
Susan
Thursday, July 9, 2009
New Deadline for Shirt Orders!!!!!
We've extended the deadline for ONLINE (pay on the blog through paypal) shirt orders. You can now order your shirts as late as 8 am EST Monday, July 13th.
You can also still order shirts using the mail in form. We must receive your form and payment by the morning of Monday, July 13.
Thank you to all who have already ordered shirts. Your support helps to motivate us so much!
Susan
You can also still order shirts using the mail in form. We must receive your form and payment by the morning of Monday, July 13.
Thank you to all who have already ordered shirts. Your support helps to motivate us so much!
Susan
Monday, July 6, 2009
Vacation, Country Chronicle column and t-shirts for sale!!!!
Below is John's Country Chronicle column for the week. Just a reminder, we're taking orders for t-shirts for one more week. The last day to order is THIS FRIDAY, July 10th!!!!!
This week’s column is coming at you from Myrtle Beach while I am on vacation with the family. We are staying at Kingston Plantation where there is a great one mile loop that is perfect for running. As I write this I am less than an hour removed from a nice three mile run. Earlier in the night while I gave our two little girls their bath for the night, my wife went on her three mile run. When she returned from her run, Susan looked great and said it went great and a lot easier than her normal running loop in Lake Carolina. I then went on my run a little after 9:00 PM at night. During the day it is just too hot to run, but when we ran at night with the breeze coming off the ocean, it felt just nice and warm. Thirty plus minutes later when I was done with my three mile run, I felt like I had just jumped into the ocean and hopped out because I have sweated so much. I am starting to wonder if Susan really went for a three mile run or if she ran down to the lobby of the Embassy Suites to get a little Starbucks.
As I write this paragraph I am less than fifteen minutes removed from getting busted by my wife digging into the pantry for a late night snack. While on vacation I do not see anything wrong with a little late night snack, but my choice of snack being a small cup full of mini chocolate chips is what got me in trouble. As I was pouring the delicious mini morsels into the cup my wife unexpectedly walked in viewing the entire scene. She asked me (as if she had no clue) what was I doing. I don’t recall exactly what my response was but some stuttering was involved I am sure. My wife then in a very sarcastic, but yet serious tone, “I bet you won’t write about this in your column.” In the end, better judgment prevailed and I put back the chocolate chips and settled on a Nature Valley Trail Mix Bar. It is always good to have a voice of reason in your house.
Before we loaded up our family truckster (Google family truckster if you have no clue what I am referencing here) and headed over to the beach for our family vacation my wife and I went to Charleston for a wedding in which I was a groomsman. While in Charleston and my wife and I each had to run four miles. It was just our luck the hotel we were staying at had a fitness room that had two nice treadmills side by side. For the first time ever we decided to get a run in together. Since both of us had to run four miles I asked my wife if she would like to race. She declined the challenge, but I still decided I was going to race. I am proud to say I came out on top just seconds in front of Susan with my late surge on the treadmill. I chose to be dignified and not to boast in a wild celebratory manner. A simple double fist pump and throwing up both hands as if someone just scored a touchdown was my means of expressing my 100% meaningless victory.
In four weeks we will be in running the Rock ‘n’ Roll Chicago Half Marathon in support of one year old Kayla Reese Jowers who in the past few months was diagnosed with Tetrasomy X. Tetrasomy X is an extremely rare genetic disorder. The Ridge View boys basketball team will be selling turquoise t-shirts to raise money for Madison’s Foundation in honor of Kayla Reese (www.madisonsfoundation.org). Madison’s Foundation is dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening diseases, and to facilitating effective communication among parents, physicians and medical experts. Each T-shirt is $15 and 100% of the proceeds after the expenses of printing the t-shirts have been paid will go to Madison’s Foundation. Please visit our blog at www.Race2Chi-Town.blogspot.com to get information on how you can order a shirt. All t-shirt orders must be received by Friday, July 10, 2009
If you have any questions please feel free to call me, John Combs, at 803-348-2365 or e-mail: jcombs@richland2.org
This week’s column is coming at you from Myrtle Beach while I am on vacation with the family. We are staying at Kingston Plantation where there is a great one mile loop that is perfect for running. As I write this I am less than an hour removed from a nice three mile run. Earlier in the night while I gave our two little girls their bath for the night, my wife went on her three mile run. When she returned from her run, Susan looked great and said it went great and a lot easier than her normal running loop in Lake Carolina. I then went on my run a little after 9:00 PM at night. During the day it is just too hot to run, but when we ran at night with the breeze coming off the ocean, it felt just nice and warm. Thirty plus minutes later when I was done with my three mile run, I felt like I had just jumped into the ocean and hopped out because I have sweated so much. I am starting to wonder if Susan really went for a three mile run or if she ran down to the lobby of the Embassy Suites to get a little Starbucks.
As I write this paragraph I am less than fifteen minutes removed from getting busted by my wife digging into the pantry for a late night snack. While on vacation I do not see anything wrong with a little late night snack, but my choice of snack being a small cup full of mini chocolate chips is what got me in trouble. As I was pouring the delicious mini morsels into the cup my wife unexpectedly walked in viewing the entire scene. She asked me (as if she had no clue) what was I doing. I don’t recall exactly what my response was but some stuttering was involved I am sure. My wife then in a very sarcastic, but yet serious tone, “I bet you won’t write about this in your column.” In the end, better judgment prevailed and I put back the chocolate chips and settled on a Nature Valley Trail Mix Bar. It is always good to have a voice of reason in your house.
Before we loaded up our family truckster (Google family truckster if you have no clue what I am referencing here) and headed over to the beach for our family vacation my wife and I went to Charleston for a wedding in which I was a groomsman. While in Charleston and my wife and I each had to run four miles. It was just our luck the hotel we were staying at had a fitness room that had two nice treadmills side by side. For the first time ever we decided to get a run in together. Since both of us had to run four miles I asked my wife if she would like to race. She declined the challenge, but I still decided I was going to race. I am proud to say I came out on top just seconds in front of Susan with my late surge on the treadmill. I chose to be dignified and not to boast in a wild celebratory manner. A simple double fist pump and throwing up both hands as if someone just scored a touchdown was my means of expressing my 100% meaningless victory.
In four weeks we will be in running the Rock ‘n’ Roll Chicago Half Marathon in support of one year old Kayla Reese Jowers who in the past few months was diagnosed with Tetrasomy X. Tetrasomy X is an extremely rare genetic disorder. The Ridge View boys basketball team will be selling turquoise t-shirts to raise money for Madison’s Foundation in honor of Kayla Reese (www.madisonsfoundation.org). Madison’s Foundation is dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening diseases, and to facilitating effective communication among parents, physicians and medical experts. Each T-shirt is $15 and 100% of the proceeds after the expenses of printing the t-shirts have been paid will go to Madison’s Foundation. Please visit our blog at www.Race2Chi-Town.blogspot.com to get information on how you can order a shirt. All t-shirt orders must be received by Friday, July 10, 2009
If you have any questions please feel free to call me, John Combs, at 803-348-2365 or e-mail: jcombs@richland2.org
Wednesday, June 24, 2009
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
Monday, June 22, 2009
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!)
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!)
Wednesday, June 17, 2009
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
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
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