Annie and Jonathan were told that they wouldn’t be able to have children. So they moved half way across the world, bought a two-seater convertible and… found out they were pregnant. Lots of other surprises followed, including some special friendships that developed after discovering their son’s disabilities.Annie’s son Pip has been diagnosed with Potocki-Shaffer Syndrome, a rare genetic disorder involving a deletion on chromosome 11. This is the same diagnosis that Betty has too! We were lucky to find Annie within one day of receiving Betty’s diagnosis and have been good long-distance friends ever since. Pip and Betty are long distance buddies too, and love seeing each other’s photos and videos on instagram.
Annie was also able to find a dear friend in another mom in LA who’s child was diagnosed with nemaline myopathy. Their children are good friends and Annie has treasured having a friend who can really understand what it’s like to parent a child with disabilities. Special needs parenting can be a lonely journey, but friends who truly “get it” can make all the difference. Listen to hear their sweet story!
Pip and Liv pictured above in their matching walkers and on Halloween – Darth Vader and a Rainbow.
Have you had any friendships or other relationships develop due to your child’s condition? Leave your story in the comments!