1q21 micro duplication

[Dln79]

Does anyone know anything about this genetic disorder I need help my boy is 3 and just diagnosed with 1q21 he also has hydrocephalus I worry so much and just need to talk to someone I have PTSD and other mental health issues and I feel like no one is listening to me can anyone help please x

[Charlie2750 Community friend]

Hello Din79, I didnt know anything about this condition until I looked it up on google.I am sure you have been told that it is an extra copy of of a small piece of chromosome present in the cells.It can happen by chance or inherited from a parent.I am sure you must have googled it up but the info I found was on an American website. Sometimes no symptoms and as you have reported hydrocephalus and other features!

Sometimes professionals dont always appear to listen and probably because they may not be able to help. We get dealt a bad hand and try to manage to play that hand sometimes struggling and sometimes someone comes along with an answer.You have to be strong and find the best solution to the problems that come up taking one day at a time. I have no idea how you are feeling but you can be reassured that as time passes and your 3yr old boy grows you will find someone who will listen.When he is old enough there may be a nursery or Opportunity group where you will meet parents of children with Downs syndrome(another chromosone disorder) or parents with children that had a traumatic start in life. On this forum you have found an area where you can find advice on all sorts of things. My son is now 32yrs old and has developmental delay but htose 32 years have been a struggle in many ways. Keep writing and soon someone else with same condition will answer.

Keep positive

charlie