Monday, 24 January 2011
Sharing stories with mum of Chrissy's genetic 'twin'
Comparing notes with another parent of a child like Chrissy was something I'd always longed to do. Until her diagnosis 4 years ago that wasn't possible. Recently, the mum of a 6-year old with the same 1q21.1 micro-deletion as Chrissy got in touch through Unique, the support group for families affected by a rare chromosome disorder. Initially, we swapped information by email & exchanged photos. By coincidence, the mum had already read a copy of my book 'Bringing Up a Challenging Child at Home.' So she already knew more about Chrissy than I knew about her daughter, Molly Mai. Today, we spoke on the phone for the first time. We plied each other with questions & shared stories for over an hour & were astonished by how much our families had in common. Their family sound lovely. Molly Mai is more mildly affected than Chrissy but it is so comforting to know that we're not alone in our experiences. We're looking forward to talking again, & maybe one day we & our daughters will meet. Thank you Unique!