Hey everyone!
I just thought I'd let you know that I've made a new mobile version of my site, Colleen's Turner's Syndrome Page.
So, it should be easier to view it on your Ipod, phone, or any other mobile device that may have internet.
Let me know what you think if you see it! =)
*C
Saturday, April 16, 2011
Monday, March 28, 2011
My Interview With Author Susan Ketchen!
Recently I found an author online , from Canada, that has a series of books involving a young girl with Turner's Syndrome. Her name is Susan Ketchen. I had an interview with her by email, and decided to share it here!
Q - What inspired you to start writing Born That Way?
A: I started this book when I was waiting for an editor's response to another manuscript. I knew I had 3 months to wait in the middle of winter, so I wanted to write something fast-paced and up-lifting. I wanted a main character who was young and energetic and optimistic about life. I started with not much more than the idea of a young girl being promised a horse when she grew as tall as her grandfather's shoulder (a situation I stole from my own childhood), and the story evolved from there.
While writing, I received ongoing inspiration from people (imagined or real) who refused to be daunted by obstacles.
Q - Did it take a while for you to come up with Sylvia's character?
A: I had a strong sense of what Sylvia was like right from the very beginning. Occasionally I was distracted by what "I" might have done if faced with Sylvia's circumstances, but then a short reflection on her tenacious gentle spirit would set the story aright.
Q - You've said that as you began writing, you noticed Sylvia was unusually short. So, you decided to do some research and find a reason for that to put in your book. What was your first thought, when you found Turner's Syndrome?
A: One of the first things that happened when I learned about Turner's Syndrome, was that I remembered what it was like for me when I was leaving childhood and entering puberty, and how ambivalent I was about "developing". I realized how much more complicated it would be for anyone with Turner's whose growth and development were uncertain. When I was young, I was going to develop whether I liked it or not. If I'd had obstacles? Or had to take medication? Or had choices? These were very interesting questions for me as a writer.
From an author's point of view, Turner's Syndrome gave me lots of scope to explore what happens to people who are perceived as being different by others, and to explore notions of gender.
Q - Can you relate anything in your life to anything in this series?
A: I can relate several things in my life to things in the series, though the book is not about me, and Sylvia is not me.
Like Sylvia, however, I was born a horse nut.
I do remember feeling like I didn't fit in at school, and noticing how the popular kids negotiated difficult social situations. Some would use humor, others would be pushy. I really admired the kids who could brush off teasing with a joke, and tried to do the same myself, but usually couldn't think fast enough.
Q - Do you think other girls newly diagnosed with Turner's Syndrome would enjoy reading about Sylvia?
A: Yes, I hope that other girls newly diagnosed with Turner's Syndrome would enjoy reading about Sylvia. Especially when we are newly diagnosed with one thing or another, there is a temptation to unnecessarily narrow our self-definitions. We become "a Turner's girl" or "an abuse survivor" or "a depressive". This never happened to Sylvia. Yes, she has Turner's Syndrome, but she is so much more than this.
You can find more about Susan and her books at www.susanketchen.ca!
Q - What inspired you to start writing Born That Way?
A: I started this book when I was waiting for an editor's response to another manuscript. I knew I had 3 months to wait in the middle of winter, so I wanted to write something fast-paced and up-lifting. I wanted a main character who was young and energetic and optimistic about life. I started with not much more than the idea of a young girl being promised a horse when she grew as tall as her grandfather's shoulder (a situation I stole from my own childhood), and the story evolved from there.
While writing, I received ongoing inspiration from people (imagined or real) who refused to be daunted by obstacles.
Q - Did it take a while for you to come up with Sylvia's character?
A: I had a strong sense of what Sylvia was like right from the very beginning. Occasionally I was distracted by what "I" might have done if faced with Sylvia's circumstances, but then a short reflection on her tenacious gentle spirit would set the story aright.
Q - You've said that as you began writing, you noticed Sylvia was unusually short. So, you decided to do some research and find a reason for that to put in your book. What was your first thought, when you found Turner's Syndrome?
A: One of the first things that happened when I learned about Turner's Syndrome, was that I remembered what it was like for me when I was leaving childhood and entering puberty, and how ambivalent I was about "developing". I realized how much more complicated it would be for anyone with Turner's whose growth and development were uncertain. When I was young, I was going to develop whether I liked it or not. If I'd had obstacles? Or had to take medication? Or had choices? These were very interesting questions for me as a writer.
From an author's point of view, Turner's Syndrome gave me lots of scope to explore what happens to people who are perceived as being different by others, and to explore notions of gender.
Q - Can you relate anything in your life to anything in this series?
A: I can relate several things in my life to things in the series, though the book is not about me, and Sylvia is not me.
Like Sylvia, however, I was born a horse nut.
I do remember feeling like I didn't fit in at school, and noticing how the popular kids negotiated difficult social situations. Some would use humor, others would be pushy. I really admired the kids who could brush off teasing with a joke, and tried to do the same myself, but usually couldn't think fast enough.
Q - Do you think other girls newly diagnosed with Turner's Syndrome would enjoy reading about Sylvia?
A: Yes, I hope that other girls newly diagnosed with Turner's Syndrome would enjoy reading about Sylvia. Especially when we are newly diagnosed with one thing or another, there is a temptation to unnecessarily narrow our self-definitions. We become "a Turner's girl" or "an abuse survivor" or "a depressive". This never happened to Sylvia. Yes, she has Turner's Syndrome, but she is so much more than this.
You can find more about Susan and her books at www.susanketchen.ca!
Sunday, March 20, 2011
Abbigail Sharron Paige Featherstone
Here is Paige Featherstone's story about her daughter with TS.
As a young mummy I've learned that health is the most important thing in life. At 16 years old I found out I was pregnant. I decided to take the responsibilities and bring my child up the best I could. At my 1st scan (13 weeks), I found out my little girl had a Cystic Hygroma measuring at 2.6cm x 3cm. At 14 weeks I had a CVS done and it came back my baby had turner syndrome and was a girl. I looked up on the internet about TS and decided to give my little girl a chance to live and choose her own fate. At 17 weeks Abbigail developed hydrops around her lungs, under her skin, around her heart and abdomen. I turned 17 years old in march 2010, At 20 weeks she then developed a heart problem where her left aorta was smaller than it should be.
At 22 weeks and 2 days I found out Abbigail had passed away. My world just ended! I had grown up so much for this brave little girl and she got taken away. I was a complete mess. At 22 weeks + 5 days on 22nd april 2010 I gave birth to Abbigail Sharron-Paige at 7:11 pm weighing 1lb 4oz. She was perfect the most beautifulest little girl I have ever seen in my whole life. I had to say hello and goodbye in the same day. It was awful; I just wanted her back. I had Abbigail blessed and spent 7hours with her. On 30th april 2010 I buried my 8 day old daughter, I was the one who carried her coffin to her grave; something every mummy doesn't want to do. 11 months on I take a day at a time and there isn't a day that goes by where I don't think about her. Health is the most important thing to me and I will never take anything for granted again; having a healthy baby means a lot and I think the more we spread the word of TS and hydrops the more people will realize what a healthy baby means.
Rest in peace baby Abbigail xxx
As a young mummy I've learned that health is the most important thing in life. At 16 years old I found out I was pregnant. I decided to take the responsibilities and bring my child up the best I could. At my 1st scan (13 weeks), I found out my little girl had a Cystic Hygroma measuring at 2.6cm x 3cm. At 14 weeks I had a CVS done and it came back my baby had turner syndrome and was a girl. I looked up on the internet about TS and decided to give my little girl a chance to live and choose her own fate. At 17 weeks Abbigail developed hydrops around her lungs, under her skin, around her heart and abdomen. I turned 17 years old in march 2010, At 20 weeks she then developed a heart problem where her left aorta was smaller than it should be.
At 22 weeks and 2 days I found out Abbigail had passed away. My world just ended! I had grown up so much for this brave little girl and she got taken away. I was a complete mess. At 22 weeks + 5 days on 22nd april 2010 I gave birth to Abbigail Sharron-Paige at 7:11 pm weighing 1lb 4oz. She was perfect the most beautifulest little girl I have ever seen in my whole life. I had to say hello and goodbye in the same day. It was awful; I just wanted her back. I had Abbigail blessed and spent 7hours with her. On 30th april 2010 I buried my 8 day old daughter, I was the one who carried her coffin to her grave; something every mummy doesn't want to do. 11 months on I take a day at a time and there isn't a day that goes by where I don't think about her. Health is the most important thing to me and I will never take anything for granted again; having a healthy baby means a lot and I think the more we spread the word of TS and hydrops the more people will realize what a healthy baby means.
Rest in peace baby Abbigail xxx
Sunday, February 27, 2011
....Another Amazing TS Story!
Recently, I've spoken with another mom about her daughter with TS. They have an amazing story!
Here's what mom has to say:
Hi Guys! My name is Penny and I am writing this blog from a mums point of view with a Turner Syndrome daughter. Mackenzie is a very lively 2 year old. She was diagnosed with Turner Syndrome at 5 months old after constant trips to the doctors and hospital with worries about her (When she was born she had really puffy hands and feet and they told me it was due to her drip). When we went to the hospital for results they took us into a room on our own and I knew straightaway there was a problem. The doctor sat us down and started explaing to us about syndromes, and then told us Mackenzie had Turner Syndrome. I asked what this would mean? And she told me that Mackenzie had a full x chromosome missing (girls have 2). She told me that Mackenzie could develop a few problems later on in life, take it day by day. She said the feet was a sign, high arch pallette (Mackenzie wasn’t feeding). Doesn’t sleep either. Then came the biggest shock of all: INFERTILITY. I just burst into tears. I was shaking and so shocked! I thought how the heck has this happened? I asked the doctor and they said the chromosome had just got lost at conception. I asked the doctor what would happen now and she said we would need to see a specialist in Turner Syndrome. As I was leaving the hospital she advised me not to look it up in the internet.
I went home and I did look it up on google straightaway. I needed to know what this was. I saw on google they had a lot of very bad cases of it which did scare me a bit . I saw a lot of the characteristics also fitted in with Mackenzie too. I then saw that the only chance they could get pregnant was through egg donotion (IVF.) At this point, I then decided the desicion was made for me to hopefully be given the chance to donate eggs for Mackenzie should she wish to use them in the future? She doesn’t have to. I just want to give her that option. I am waiting on an appointment with the IVF doctors to hopefully set the wheels in motion. I know some people don’t agree with what I am doing but I would just like to ask if you were given this scenario would you do it? I know I would do anything to help my children if they wanted it. One thing I have realized with Turners syndrome is not enough people are aware so I am also raising awareness of it. This is something that affects 1 in 2500 girls and most people don’t find out till there teens or even later. We are so lucky Mackenzie was diaognosed now. Mackenzie has started growth hormone treatment to help her grow (it is doing a fantastic job). She is also part deaf too, she has hearing aids and communicates through sign. We take each day as it comes and deal with every new thing that arises. I will keep you informed of the ivf appointment and let people know how it goes. I thank you for reading my story.
If you want more info, check out this facebook group by visting the link I have posted on my page, titled More Doctors Should Be Aware of Turner's Synd.
Here's what mom has to say:
Hi Guys! My name is Penny and I am writing this blog from a mums point of view with a Turner Syndrome daughter. Mackenzie is a very lively 2 year old. She was diagnosed with Turner Syndrome at 5 months old after constant trips to the doctors and hospital with worries about her (When she was born she had really puffy hands and feet and they told me it was due to her drip). When we went to the hospital for results they took us into a room on our own and I knew straightaway there was a problem. The doctor sat us down and started explaing to us about syndromes, and then told us Mackenzie had Turner Syndrome. I asked what this would mean? And she told me that Mackenzie had a full x chromosome missing (girls have 2). She told me that Mackenzie could develop a few problems later on in life, take it day by day. She said the feet was a sign, high arch pallette (Mackenzie wasn’t feeding). Doesn’t sleep either. Then came the biggest shock of all: INFERTILITY. I just burst into tears. I was shaking and so shocked! I thought how the heck has this happened? I asked the doctor and they said the chromosome had just got lost at conception. I asked the doctor what would happen now and she said we would need to see a specialist in Turner Syndrome. As I was leaving the hospital she advised me not to look it up in the internet.
I went home and I did look it up on google straightaway. I needed to know what this was. I saw on google they had a lot of very bad cases of it which did scare me a bit . I saw a lot of the characteristics also fitted in with Mackenzie too. I then saw that the only chance they could get pregnant was through egg donotion (IVF.) At this point, I then decided the desicion was made for me to hopefully be given the chance to donate eggs for Mackenzie should she wish to use them in the future? She doesn’t have to. I just want to give her that option. I am waiting on an appointment with the IVF doctors to hopefully set the wheels in motion. I know some people don’t agree with what I am doing but I would just like to ask if you were given this scenario would you do it? I know I would do anything to help my children if they wanted it. One thing I have realized with Turners syndrome is not enough people are aware so I am also raising awareness of it. This is something that affects 1 in 2500 girls and most people don’t find out till there teens or even later. We are so lucky Mackenzie was diaognosed now. Mackenzie has started growth hormone treatment to help her grow (it is doing a fantastic job). She is also part deaf too, she has hearing aids and communicates through sign. We take each day as it comes and deal with every new thing that arises. I will keep you informed of the ivf appointment and let people know how it goes. I thank you for reading my story.
If you want more info, check out this facebook group by visting the link I have posted on my page, titled More Doctors Should Be Aware of Turner's Synd.
Sunday, February 13, 2011
A Cracking of the Heart
I came across this book a few days ago. I know some of you may have already heard about it, but for those who haven't, it seems like a great book! I plan on reading it soon.
You can find it on amazon.com if you'd like to order. There are also many interviews with the author online.
You can find it on amazon.com if you'd like to order. There are also many interviews with the author online.
Tuesday, February 1, 2011
So....how will you spread TS awareness?
Since it is TS awareness month, I came up with this idea. As the month goes on, why don't you guys send me pictures of yourselves and what you're doing to spread awareness? Once the pictures start coming, I can post them right here on the blog! Just be sure to send me names and a descripton if you're going to participate.
....TS Awareness is finally here!
Ok...the month for TS Awareness is finally here. I hope everyone enjoys it. Do the best you can to spread the word about TS!
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