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

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.

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.

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!





Friday, January 21, 2011

February - TS Awareness Month!



Some of you may have already heard, but the TS Society is sponsoring the first TS awareness month this coming February 2011.

I think this is awesome, and it's a great way to spread the word about TS! If you want to find out more, visit the society's website at www.turnersyndrome.org!

Monday, January 17, 2011

...getting excited!

Hey everyone!

How are you all? I felt the need to check in this morning! I've got some updates. First of all, I have my next endo appointment coming up on the 27th. At the last one, she told me that I may be coming off the gh shots very soon! I'm soooo excited about that! My height is a little over 5'2. We're hoping I can get to at least 5'3. She's also going to up the dose on my estrogen patch. I'll let you know what happens at this next visit! =)

Keep checking my blog for some new posts to come soon!


*C