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.
Tuesday, May 19, 2009
Saturday, May 16, 2009
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!
Tuesday, May 12, 2009
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
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
Wednesday, May 6, 2009
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!
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!
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