Please take a moment to introduce yourself to the community. Everyone here has something to share about 1p36 Deletion Syndrome. For the discussion boards, we ask that you keep your full name and location private.
Proud mom of a beautiful 1p36 girl
My 17 month old grandson has 1p36 deletion syndrome
I am a gramma-to-be to two special children with this condition.
I am a mother of 2 children. My son is 10 yrs. old, in 5th grade and loves karate. My daughter is 3 yrs. old and hass been diagnosed with Monosomy 1p36.2. She also suffered a brain injury at birth. I would love to connect with other parents with similar situations and also just make new friends and learn more about others.
My name is Tammy and I have a 13 year old daughter with 1p36 deletion syndrome. I also have a 20 year old son who is a sophomore at Georgia Tech and a 15 year old son in his freshman year of high school.
My daughter, Kasey, was born September 29, 1998 – almost 10 weeks premature. She was diagnosed with having 1p36 deletion when she was about 10 months old. She’s an incredible joy to my life, my husband’s and Kasey’s two sisters, Kayla and Morgan.
While it isn’t always easy to have a child with special needs, it is always a blessing to have Kasey.
I am the mom of a 7 year old with -1p36.2
Our 15 month old son has -1p36 deletion syndrome. We learn so much from the other parents with older children.
Our 15 month old grandson Joseph has the 1p36 deletion
My name is Gloria. I have a daughter Carly- 10, who has del.1p36. I also have two sons, Cameron-13 and Brent-7 and a wonderful husband, Chris. We live in Waterloo, Ontario.
I am a member of the yahoo group, but received an email from dhughes to check out this site. So far, I am impressed.
Looking forward to building a strong support group here as well.
I have a 4 year old little girl with this syndrome. I am always interested in learning more and meeting new families and sharing my own experiences.
Hello,I’mSusan and mum[foster]to Jennifer who is now 17 years old and is severely disabled,with complex health problems. Jenny is the joy of my life,we’ve been together for 12 years since her birth Mum died. I gave up work 4 years ago because Jennys health deteriorated and she was in hospital a lot.Although freinds sympathise they have no real idea of what life is like with a disabled child and I feel that other parents of disabled children understand the highs and lows far better.Apart from Jenny my other passions are reading,knitting,horror films,and my 2 geriatric cats.
Looking forward to making new friends.Best wishes
Susan and Jennifer
MY DAUGHTER IS LISSA. SHE IS A MIRACLE!!! I AM HAPPY TO KNOW YOU ALL ARE HERE!
mom to cody who is 19 yrs old, who has the delation, and heart problems we live in indiana
My name is Regina I have 3 girls and my 8 yr old has 1p36
We live in North Texas. If you have any questions please ask!
Regina mom to
Alexis 12, Katie 8 (1p36), & Emma Grace 3
My daughter Kate was diagnosed with a 1p36.33 deletion at 18 months of age. Since then, the best support we have received is from other parents of children with the same or similar condition.
Baby Sam was born with 1 P 36 and he is my grandson! Would love to learn all there is to be able to support him and his family in any way possible. Willing to connect with anybody for advice with this syndrome.
I have twin girls who will be three next month. One of my daughters has 1p36 deletion syndrome. I am just looking to connect with other families.
Kylee
hi everyone, I got the link for this off the yahoo group so I thought I would join. My daughter Roisin is now 5 and has 1p36 deletion syndrome.
Paul