Currently viewing the tag: "introduction"

Purple to Orange

October 31, 2013 by

As I go to unpack, another file box, from our recent move.  There it is.  I pull out the purple (“puhpo”, as Sophia would say) folder. As I open the stuffed folder that holds all the information given to us about Sophia’s diagnosis last year, I’m silent and still.  That hard-to-swallow feeling is back in […]

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Hello everyone this is my first time on this website and thought I should share my niece with all of you since I read some of the stories of other children with WHS and it touched my heart. So I guess ill tell you more about my niece,her name is Nayana.  When my family first found out […]

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October 8, 2012 by

Hey everybody! My name is Charity, my sons is Karson and his dads name is Trey. He was diagnosed with Wolf-Hirschhorn 3 weeks after he was born. It came as a shock to all of us when he popped out and had a cleft lip and palate. He was rushed to Levine’s Children’s Hospital right […]

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  Reese is 17 months old and thriving! Reese has had her share of hospitalizations, MRI’s, Neurology and Eye appointments. Reese has been in a early intervention program since she was 5 months old however we did not know exactly what she had until about 6 months ago. She see a genetics Dr this week, […]

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Nathaniel was born 1/8/11. After my first ultrasound, I got a call from my OBGYN and she told me that he might be born with a cleft lip. I was referred back to my friend who specializes in difficult pregnancies, which turned out to be the person who confirmed my pregnancy originally. Turned out that […]

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March 31, 2012 by

Dear new friends: it’s been 9.5 months since our little one came into the world in early June of 2011. Your blogs and discussions have all been great company for me, and I wanted to reach out and “give back” with our own story. Fiona and I look forward to knowing you all better, either […]

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Expecting a Baby Boy

March 5, 2012 by

After nearly two months of exploring and using this site for support my husband and I wanted to introduce ourselves to the community and share our story. Nate is my amazing husband and we have a brilliant 1½ year-old son, Connor. On the day of our son’s 1st birthday party we found out we were […]

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February 14, 2012 by

I learned about this site when I read that the Rivera’s were told their daughter Amelia couldn’t have a kidney transplant. I was interested because my 32 year old daughter who has WHS also has kidney failure and may need a transplant. I care deeply about the rights of all individuals with developmental disabilities. As […]

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introducing Teejay

February 9, 2012 by

We just wanted to say hi to everyone and introduce our special little boy Teejay. Teejay was born at the end of february 2011 about 5 weeks earlier than planned and weighing in at just over 4 pounds. He spent the first 3 weeks in hospital mainly due to the fact that he would not […]

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Meet Evan

November 16, 2011 by

I have been reading this site for the last few months so I thought I would take a minute to introduce my son Evan! He is 2 years and 10 months old and at 8 months old was diagnosed with a deletion (WHS) and duplication in chromosome 4. My husband and I were thrilled to […]

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Perfect to me..

October 24, 2011 by

Let me introduce you all to my beautiful baby girl grace. She is 14 weeks and it’s flying by… Time goes so quickly and every day is so precious. We found out that she has whs at 9 weeks.. And our world felt like it had come crashing down. I must say that to me […]

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Ava Lynn

August 30, 2011 by

Hello everyone. My name is Carissa. I’ve been reading this site for a couple months now, and I know God brought me here to help get me through one of the toughest trials of my life. Let me tell you why … I guess you could say that our story started nearly a year ago. […]

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3 months after giving birth to my first daughter, my boyfriend and I found out I was pregnant once again. We never could have imagined what we would later find out. When I was 26 weeks I went to the ER because the baby was sitting on my sciatic nerve and was causing me great pain. […]

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Olivia Grace

July 29, 2011 by

Ok so I guess it’s time to introduce my daughter to the community. I have been reading posts and information on this site since my daughter was 10 days old and we were told about her condition. I have gone back and forth between using this site to help me cope and wanting to cope […]

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I want to start by sharing that our special little boy with WHS went to be with Jesus after 5 ½ short years. He was born Nov 26, 2005 and died April 20, 2011. His name was Brett Alan, and he was one of the greatest joys of our lives.

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Introducing Kinga

June 24, 2011 by

Hello, we would like to describe our daughter Kinga. We live in Poland and we are very happy that this website has been existing, and that the site is open also for foreign families. Our daughter Kinga was born on November 25, 2006. She was tiny, had no appetite and developed more slowly than other […]

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Introducing Olivia

May 21, 2011 by

Olivia’s Story I found this website the day I received the diagnosis of my daughter-that was 5 months ago. Reading the stories of other affected children and their families has been very helpful and therapeutic. Although I still struggle with sorrow and grief for the loss of a “normal” child, I am feeling more at […]

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I’d like to start by saying that after the diagnosis of our daughter 3 weeks ago, this site has been one of the main things keeping me positive and I have all of you to thank for that. Now I’d like to share our story and introduce our little girl. Ellye was born on November 19th 2009 via planned c-section at 37 weeks. Since the 20 week ultrasound, we had gone every week to check her growth because she’d been diagnosed iugr for unknown reasons

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April 25, 2011 by

Im so happy to have found this website. Our little girl Claire just turned 9 months and we found out she has WHS last week. I will share her story soon!

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Tyler James

April 24, 2011 by

My name is Autumn and 4 weeks ago I gave birth to a 4 lb 13 ounce baby boy that we named Tyler. I was induced at 36 weeks because of growth restriction that doctors thought was due to a 2-vessel cord. After delivery he was immediately taken to the NICU. Two days after he was born, the NICU doctor informed us he wanted to do chromosomal testing because of facial dysmorphic features.

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Arin Rae is here!

March 23, 2011 by

Thanks to all for your thoughts and prayers. I would like to announce that Arin joined us on Monday March 21, 2011 at 1040pm EDT. She was 38 weeks in gestation and was 3lbs 2.6oz and was 16in long. She is in the NICU and on the vent due to pulmonary hypertension. Though is only […]

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I have been following this blog since it started, which was not too long after my son Frank was born.  And I have been meaning to write his story for the same amount of time.  Today is the day!   Frank was born November 25, 2009, which was the day before Thanksgiving that year.  It […]

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Hello from Kayleen

March 18, 2011 by

I have been reading some of the posts and wanted to introduce my daughter Kayleen.  She will be six years old in April.   She has not made the progress that many of your children have but your stories give me hope.

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Left with a Memory…

March 16, 2011 by

I want to introduce you to my little miracle. His name is Blake Isaac Henderson he was born May 6, 2009 and weighed 3lbs 2oz and was 16 in long.

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Say hello to Harry

March 15, 2011 by

We have been reading your stories for a little while now and have now have plucked up the courage to introduce our amazing little soldier. Harry McKerral Smith was born in April 2010, we had no idea of any problems until the day he was born. He was born at full term at a weight […]

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Big Jake

March 15, 2011 by

I wanted to introduce everyone to Jake. Jake is 10 years old and a wonderful child. He was originally diagnosed with Pitt Rogers Danks Syndrome, but later a wonderful geneticist told us he felt Wolf Hirschhorn and PRDS is one and the same syndrome.  Jake is 51 inches tall and weighs 70 lbs. He has […]

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let me introduce Mason

March 11, 2011 by

Mason was born 03/03/10.   My labor was induced at 37 weeks as the MD was concerned with the IUGR.  During pregnancy we also learned of his bilateral club feet and horse-shoe kidney. Mason weighed 4lbs 6oz. he failed the hearing screen in the hospital and had difficulty latching on. We were discharged from the hospital […]

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New Here. . .

March 8, 2011 by

I will be taking in my nephew, Corwin, this summer. He is 10 and wheelchair bound. He is 60 pounds now, so this will be a challange, but we love him dearly and want to make it work.

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Arin Rae

February 25, 2011 by

While baby Arin has not joined us yet, I am 34 weeks pregnant, I am writing this post to thank you all for your posts as they have helped my husband AJ and I through some really difficult days.

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Along came Mia…

February 13, 2011 by

Our story begins much like many of the others I have read here. Throughout Vicki’s pregnancy a lot of friends, relatives and colleagues had commented on how “neat” her bump was.

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