my name is jennifer holmes and i am 25 years old. i was born healthy with my twin brother in august of 1988. i was diagnosed shortly after my 14th birthday. we went to the doctor because of being concerned with my height and puberty. so i was then sent to a pediatric endocrinologist who knew right away that i had t.s. but needed to confirm with blood test. i was then lucky enough to start on growth hormone to help me grow. i didn't have a lot of signs of t.s. just short stature, slightly webbed neck, low hair line and ear infections as a baby. i now work in optical and still learning and growing in different ways. i love talking to other ladies with t.s. its nice to be able to learn from others. you can find me on facebook.
have a wonderful day!
my name is rachel bowman and i am a 32 year old turner syndrome woman from ky. i was diagnosed at the age of 14 yrs old. i showed no signs of ts, except short stature. finally at age 14, my mom got tired of my pediatrician telling her that i would hit a growth spurt and sought out the opinion of a local pediatric endocrinologist. after the karyotype blood test, it was confirmed that i had ts. i married my husband at the age of 21, went through nursing school, then began the ivf with egg donation process. i became pregnant the first try but miscarried at 9 1/2 wks. i went through 3 more rounds before turning to domestic adoption. after 18 months of waiting to be placed, we were matched with a beautiful newborn baby girl who we named hailey. my husband and i have since divorced. i have bought my own house, held the same job for over 7 1/2 yrs, and have the best group of friends and family. i love talking with others about ts and helping others with ts by giving advice and sharing my experience. feel free to email me at firstname.lastname@example.org anytime! rachel bowman (rachel elizabeth on facebook)
my name is kym hall and i was diagnosed with turner's syndrome at 16 years old.. i was born the youngest of six with my twin brother in 1971. i showed some signs growing up of turner syndrome but doctors never put it together till 16 . i was always the shortest in my class had the webbed neck and hearing problems. at 16 my mom was concerned about my growth and puberty so off to the doctors we went then did a dna test which confirmed turner syndrome. it was scary at first not understanding turner syndrome and being a teen but i learned quickly not to let it stop me. meeting others with turner syndrome helped me as well. i went to college got my ba and masters in counseling.
i am currently a teacher and a volunteer advocate in my home state of new jersey. i was instrumental in helping getting a bill passed that makes february turner syndrome awareness month in new jersey.
i want every turner syndrome baby to have the advantages i didn't have due to my late diagnosis. i have a passion for awareness and hope to allow more girls a much earlier detection.
look me up on youtube search kym turner syndrome diaries for more info on my story at: https://www.youtube.com/watch?v=rb8mgxt2pps
this is ashley baxley
on behalf of her butterfly (pictured) madison (madi):
it was may 29th 2009 (my birthday) we had our gender reveal ultrasound and we were very excited to be having our 2nd baby girl! ally was going to have a little sister! we were over the moon. but little did we know that our excitement would be short lived. we walked into the exam room to find my dr looking like a ghost. she gently pulled up her stool and sat down. she then began to tell us that there was something wrong with our baby girl. the ultrasound tech found a large cystic hygroma (fluid filled sack) on the back of her neck and we needed to see a specialist right away! the next week waiting for that appointment was living hell! what was wrong with our daughter? will she be ok? well, the day arrived and we saw the specialist and had an amnio done to test the amniotic fluid so we could get some answers. a little over a week passed and the dr called with the results. our baby had turner syndrome and was given a 1% chance of survival. the specialist reccomended that we terminate the pregnancy since the baby would likely pass away anyways. that was not an option for us, we chose to fight for our baby girl, and only god was going to take her away from us! we prayed sooo hard for our sweet girl, she just had to make it, there was no other option! on september 30th 2009, god granted us our miracle. madison leanne baxley was born. a beautiful, swollen baby girl! she has so much fluid on her little body that she looked like she weighed at least 15lbs, but in reality she was a 7lb 15oz little fighter. she was immediatly taken to the nicu after birth and due to medical issues on my end she was 2 days old before i got to see my princess! she was transferred to the childrens hospital at 4 days old and had her first open heart surgery at 6 days old. she spent 15 days total in the hospital before we brought her home. she is now a thriving 4 year old and she amazes us every single day. she battles sensory processing disorder, ocd, approx 5 heart defects, vision problems, kidney problems, hypothyroidism, acid reflux, lymphedema and more. and she will likely need more heart surgeries in the future! she is our beautiful little butterfly and i know that god has huge plans for our little girl.
this is victoria she is the daughter of cindy prince
and this is her story of turner syndrome as shared by her mother. victoria will be 4 in april of 2014 and knock on wood, right now she is doing great. she was a preemie and had struggles early on in life but has over come many obstacles and is thriving. she is a very strong fighter like all of the ts butterflies.
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this is the story of hannah as told by her mother judy robertson.
when i found out i was pregnant for the second time i was very excited and was hoping for a girl as i have my son logan. i went for my twelve week scan at aberdeen maternity hospital i was really excited to say the least. my mum was there and so was my partner. i lay there looking at the screen watching my baby. then turned to look at the lady doing the scan she looked quite worried so i asked if everything was ok, she said that my baby had a very large sack of fluid on her neck and that it could mean there is something wrong so she sent for a doctor to have a look and get a second oppinion. what the hell was going on!!!
the doctor came and had a look, she then left the room and we were asked to follow the nurse to another room, when i entered i new they were going to give us bad news as there was a box of tissues on the table, before they said anything i burst into tears. the doctor began to explain what was wrong she said that my baby could have downsydrome, edwards sydrome or turners sydrome i was very confused how ? why? she said the only way we could be sure is for me to come back and have an amio but there was a chance if i had it that i could lose the baby. i decided that i would have the amio.
a few weeks l8tr i returned and went threw the amio they couldnt tell me right there and then what was wrong so i returned home to wait for a call, a week l8tr i recieved a call asking me to come in asap.
we got there and they took us back into the room with the tissues on the table, the doctor said i was having a girl and that she had turners syndrome i really didnt know what t.s was, but by the way she spoke about it, it seemed very scary. she even said that i can have an abortion i was shocked, was it really that bad that i was being offered an abortion. i asked why and she said that it was more than likely i would lose her within the next two weeks and if not there would be huge complications ( boy were they wrong) so i went home and looked up on the internet, i wasnt rewally sure what i was looking for and i couldnt understand as every photo or every comment i saw it seemed that the doctor was very wrong, so after a very sleepless night i came to the decition that if she wasnt ment to be she would choose that path herself.
2 weeks before hannahs due date i gave birth to a beautiful girl weighing 5ib 6oz, she had a very puffy foot, but appart from that all was fine, hannah was taken for several scans over the next few months, and just about all came back fine apart from her kidney scan which said that she had a very large kidney and the other one had shriveled up. ( although i have been in with her again and they say she has a horse shoe shaped one) then again and they said she only had one :( very confusing
hannah started growth hormone when she was 4 years old and is doing very well the doctors say she has grown so well that they think she is taller than most girls at her age with her condition. she is a very happy thoughtful girl who lets nothing get in her way. she is top in her class for most things, she goes to dancing and has lots and lots of friends. at the moment she is going through a stage with playing with dolls and walking around with a pillow up her jumper pretending she is pregnant, talking about the kids she is going to have when she is older, this makes me very sad as i know that she cant have children because of her condition and i cant tell her as i dont want to spoil her wee dream, i know i will have to soon when the right time comes.
i am so glad i didnt listen to the doctor, i have a very pretty princess for a daughter whom is my world
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