Newly Diagnosed Family – Parent to Parent Ambassadors
As a parent, receiving a diagnosis for your child that is life-changing will shake you to your core. But we are not alone! Having a safe place to explore feelings of “this is not the way it’s supposed to be” is what Dup15q Alliance Parent to Parent Ambassadors is all about. Sharing the emotional process that often comes with the diagnosis of dup15q syndrome with someone who has also experienced these feelings through Peer Support, can be helpful to many families.
Parent to Parent Ambassadors are Peer Support Specialists who have walked the path of a dup15q diagnosis and have volunteered to support their fellow dup15q families. Parent Ambassadors have completed a 6-week Child Neurology Peer Support Training to listen to their peers along this emotional journey without judgment. Peer Support is a process in which reciprocal support is facilitated by one trained individual who shares his/her common life experience with another individual. This supportive, fluid process aims to enable mutual empowerment and a sense of connection.
Meet Our New Family Parent to Parent Ambassadors
Tiffany - Read my Story
“My advice for a newly diagnosed family of a child with Dup15q, is to allow yourself the time to have lots of different feelings. The journey is a marathon, not a sprint. You will go through times of sadness, anger, resentment, fatigue, frustration, and self-pity, but do not rest there”
Sarah - Read my Story
My biggest advice would be to give yourself grace, let yourself grieve, follow your instincts, surround yourself with a great “team”, and don’t be afraid to share your truth!
Robert - Read my Story
“The best advice I can give for new families is to enjoy the journey. There will be a grieving period after the diagnosis, actually several throughout the journey, so acknowledge that but move forward.”
