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Welcome to our page!
Sammie is 9 years old and was born with a genetic anomoly called 1p36 Deletion Syndrome. We knew from the beginning that something was different. At 10 weeks gestation, Sammie's teeny tiny heart was beating at a rate of 210bpm. The specialist visits began then and haven't stopped.
After numerous visits it was decided we would be seen in Boston to help figure out what was going on. Sammie was born there 5 weeks early and though he had many medical issues we were able to come home 5 weeks later. The 1p36 diagnosis came at the end of his hospital stay. All we knew about what it meant to have 1p36 deletion syndrome was Sammie suffered from congenital heart disease that would require surgery, life long medication and the cure for his specific defect is a heart transplant. It meant he would be developmentally delayed, may not walk (he's sooo close!!!), may not verbally communicate, and no one knew for sure how he would develop. Everything we read was so depressing. So I set out, on the internet, to find something positive... Something hopeful. We found a group on a yahoo page that evolved into a Facebook group and has become our family. People from around the world who truly understand us and what we are going through.
Just after Sammie's 1st birthday we flew to Florida for our first ever 1p36 conference. A small group of 1p36ers and their families met, listened to doctors, and shared stories. The most wonderful experience and feeling to share.
Sammie and I have been fortunate to attend 3 conferences. It has been several years since our last. Every year we miss is heartbreaking. The conference is bigger now, with more families and more speakers in attendance. While we are able to check in on our 1p36 family on facebook, the truth is, there is nothing like a hug and sweet conversation with another 1p36 mommy. Quite truthfully, it's the only time I've ever felt comfortable enough to actually share stories that I typically would never share for fear that someone might not understand.
Any funds that are so kindly donated will be used to pay back my wonderful sister, Sammie's Aunt, Lynn for her generous purchuse of our plane tickets to San Diego, the hotel cost, car rental, conference fees and other unforseen costs for the trip. A long weekend at the end of July will cost approximately $3500-4000. We will board the plane on July 27, 2016 for San Diego!
Thank you for stopping by our page~
Sammie is 9 years old and was born with a genetic anomoly called 1p36 Deletion Syndrome. We knew from the beginning that something was different. At 10 weeks gestation, Sammie's teeny tiny heart was beating at a rate of 210bpm. The specialist visits began then and haven't stopped.
After numerous visits it was decided we would be seen in Boston to help figure out what was going on. Sammie was born there 5 weeks early and though he had many medical issues we were able to come home 5 weeks later. The 1p36 diagnosis came at the end of his hospital stay. All we knew about what it meant to have 1p36 deletion syndrome was Sammie suffered from congenital heart disease that would require surgery, life long medication and the cure for his specific defect is a heart transplant. It meant he would be developmentally delayed, may not walk (he's sooo close!!!), may not verbally communicate, and no one knew for sure how he would develop. Everything we read was so depressing. So I set out, on the internet, to find something positive... Something hopeful. We found a group on a yahoo page that evolved into a Facebook group and has become our family. People from around the world who truly understand us and what we are going through.
Just after Sammie's 1st birthday we flew to Florida for our first ever 1p36 conference. A small group of 1p36ers and their families met, listened to doctors, and shared stories. The most wonderful experience and feeling to share.
Sammie and I have been fortunate to attend 3 conferences. It has been several years since our last. Every year we miss is heartbreaking. The conference is bigger now, with more families and more speakers in attendance. While we are able to check in on our 1p36 family on facebook, the truth is, there is nothing like a hug and sweet conversation with another 1p36 mommy. Quite truthfully, it's the only time I've ever felt comfortable enough to actually share stories that I typically would never share for fear that someone might not understand.
Any funds that are so kindly donated will be used to pay back my wonderful sister, Sammie's Aunt, Lynn for her generous purchuse of our plane tickets to San Diego, the hotel cost, car rental, conference fees and other unforseen costs for the trip. A long weekend at the end of July will cost approximately $3500-4000. We will board the plane on July 27, 2016 for San Diego!
Thank you for stopping by our page~