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.
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.
<p>3p 12.1 deletion syndrome</p><p>Greetings,<br />4 years old special needs non verbal daughter is diagnosed with 3p 12.1 deletion syndrome. No one in the family has this chromosomal/genetic disorder. She is not making any progress in ABA, Speech therapy, Occupational therapy and Feeding therapy. We are familiar with 3p deletion syndrome. We are reaching out to get to know if there is any research/clinical trials/gene therapy or treatment going on anywhere for 3p 12.1 deletion ? Or if anyone can connect us with right resources/guide us in right direction please. Any help would be much appreciated.</p>
<p>3p 12.1 deletion syndrome</p><p>Greetings,<br />4 years old special needs non verbal daughter is diagnosed with 3p 12.1 deletion syndrome. No one in the family has this chromosomal/genetic disorder. She is not making any progress in ABA, Speech therapy, Occupational therapy and Feeding therapy. We are familiar with 3p deletion syndrome. We are reaching out to get to know if there is any research/clinical trials/gene therapy or treatment going on anywhere for 3p 12.1 deletion ? Or if anyone can connect us with right resources/guide us in right direction please. Any help would be much appreciated.</p>
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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.
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6 Reactions<p>3p 12.1 deletion syndrome</p><p>Greetings,<br />4 years old special needs non verbal daughter is diagnosed with 3p 12.1 deletion syndrome. No one in the family has this chromosomal/genetic disorder. She is not making any progress in ABA, Speech therapy, Occupational therapy and Feeding therapy. We are familiar with 3p deletion syndrome. We are reaching out to get to know if there is any research/clinical trials/gene therapy or treatment going on anywhere for 3p 12.1 deletion ? Or if anyone can connect us with right resources/guide us in right direction please. Any help would be much appreciated.</p>
Welcome @nako, I moved your message to this existing discussion:
- Chromosome 3p Deletion Syndrome
https://connect.mayoclinic.org/discussion/chromosome-3-deletion-syndrome/
I did this so you can read through the previous helpful posts and connect easily other parents like @mcconnector @aworriedmom @jennsprung @lucygehling1176 and @5qdeletion. They too are familiar with chromosomal deletion and may have some tips regarding clinical trials, therapy approaches and resources.