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Chromosome 3p Deletion Syndrome

About Kids & Teens | Last Active: Oct 3, 2023 | Replies (23)

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@zuzana

Hi James! Happy Easter to you ! 🙂 You made me cry here. Tell me something about yourself. I still can't believe it.) We are going through a very difficult time right now. The fact that there is still someone like us in the world is like a light in the tunnel. My daughter is now an adult, but she still looks like a bigger kid. So it's like a lifetime on maternity leave.

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Replies to "Hi James! Happy Easter to you ! :) You made me cry here. Tell me something..."

Hi again, Suzana. Thanks for your Easter greeting. I still don't know how to insert emojis, or even where to find them here, so no happy-face this time, either. Sorry I made you cry; that was the last thing I had in mind. If you were here or I were there, you could peel an onion under my eyes until they overflowed with tears. It wouldn't take much, or long. If I knew how to find emojis, I would insert a teary-eyed face right here. That -- I hope -- might make you laugh! My cousin, the mother, said the same thing you say: "I can't believe it! The doctor said there are only a few people in the world like us -- and now we found two of them!" I can't wait for you and my cousin to meet each other. "A lifetime on maternity leave" -- I like your description. --Jim

P.S. I meant to say "Thank you" for the picture of your daughter. She looks happy!

Oops! I meant Zuzana, not Suzana. Please forgive me. Sometimes my fingers stray where my brain doesn't intend them to stray, as if they have little minds of their own. Thanks again.

Dear Zuzana, this Jim's cousin Lucy. It's so nice to be able to connect with you and perhaps discuss our challenges that we have with our daughters. My daughter sammy is 17 years old. We also struggled for years trying find a support group or anyone that has the deletion of chromosome 3. Or anyone that share the same condition as my daughter. We are delighted to hear that we are not alone. My also daughter also has seizures but we able control them. Sammy has developmential delays, behaviors problems and sensory issues. She has been seizure medication for years along with other meds she takes everyday. We struggle with coping with her behaviors because she's a big girl and can be very strong. Love to from you and hopefully we can share emails or phone number. Don't let Jim make you cry anymore. He is the nicest person you will ever meet. I was also so surprised when my cousin told me he got a response from you and that your daughter also had same condition as my my daughter Samantha.