Hi, my name is kelly1234! 2 of my children have deletation of chromosome 15 and autism

kelly1234

Hi my name kelly , im a mum of 4. Two of my children have deletation of chromosome 15 and autism . Hoping to find some families with the same deletation to chat too.

chiarieds

Hi @kelly1234 - & welcome to the community. Microdeletions of Chromosome 15 can be quite rare depending on where the deletion is, as you probably know.

If one of your affected children has been diagnosed within the past year, then Scope have a programme for parents called 'Navigate' that you may be interested in joining. Please see: https://www.scope.org.uk/family-services/navigate/

Scope also has a programme called 'Parents Connect,' which is currently available online that you would be able to join regardless. Please see: https://www.scope.org.uk/family-services/parents-connect/

Another resource may be 'Unique.' You can see which microdeletions (& a microduplication) of chromosome 15 they currently support here: https://rarediseases.info.nih.gov/organizations/184   tho it may still be worth contacting Unique anyway as they will likely have parents in a similar situation. Please see: https://rarechromo.org/

We do have a lot of parents who have children on the autistic spectrum, as well as several members that were not diagnosed until they were adults. You can see Scope's section on 'Autism & neurodiversity' here: https://forum.scope.org.uk/categories/learning-disabilities-and-autism

Hoping some of this may help.