Hello, our daughter is 3 years old with 15q26.2
Hello,
my daughter is diagnosed with this disorder since she is 5 years old. She is now 11 years old and is going to normal school and is verry happy with her life :-).
Joussa
Our daughter was diagnosed at 2 weeks with this deletion and is now 4 months. She is extremely small but strong and healthy so far.
Our Daughter is 11 and was diagnosed within a few days of birth. She is the most normal, sassy, fun 11 year old. She is very short (54 inches) but is on Growth Hormone to help that. She started it in June of 2016 and since then has grown 4 inches so it's working. The Endocrinologist thinks she may hit 5 feet! I'd be OK with that for sure. School does not come easy to Krysha. She has needed extra help and also get tutoring. She has a bit of ADD and takes medicaiton for that which does help. The Dr's initially told us that any chromosomal abnoramality can cause learning issues. Honestly, I don't know if it's the deletion or just her. Meaning, if she'd never been diagnosed, we would just think school is tough. However, since we did know, we had her in the best accredited daycare we could find and have tried to give her as many advantages as we couild.
My daughter is a little over a month old, still in the NICU. We found out about her diagnoses 3 weeks before due date. Due to the limited information and the severe conditions they assumed she was in with a diaphramic hernia, the doctors were sure she wouldn’t have a long life span after birth. My daughter has severe symptoms that are common with the deletions and her main issue is eating. Since she has a cleft palette and us the parents cannot fully come to a decision on what to do next on her feeding intake is the main reason why she is still a patient in the NICU. Any other child being feed via G-Tube?
Thank you all for sharing.
I'm a 20-year-old who is currently a sophomore majoring in biology. I have a huge passion for genetics because of my diagnosis of 15q26.2 deletion. I was told that I'm the only case (so far) with very minimal side effects from this disorder. The only effects I have are short stature and a compromised immune system. I was diagnosed sometime in 2009-2012
My daughter has 15q26.2-26.3 deletion including the IGF1R gene. She has minimal side effects, mostly just short stature. She's the only one in New Zealand diagnosed with this at the moment, so it's a bit tough with no medical staff having much of an idea about the deletion. I have to have all the information myself.
Has everyone seen the UNIQUE brochure on https://rarechromo.org/disorder-guides/ ? Click on English, scroll down to Chromosome 15, and next to 15Q26 click View. Lots of info, this is what my paediatrician printed out for us on diagnosis.
Also, check out the Magic Foundation at https://www.magicfoundation.org/ , if you email them they can do a screening for you and the report gives helpful info to show your medical staff. They're interested in getting anonymous data from other IGF1R deletion people, which should help us all.