By Heather Hair
Meet my niece Bailey Kinsella – Tetrasomic 15q11.2-15q13.2, Trisomic 15q13.2-15q13.3 (IDIC15)
In layman’s terms she has additional chromosome material on chromosome 15.
Bailey has Global Development Delay and Speech delay, for which she has to attend a special needs school and receives daily therapies. She loves to be outside, pouring water, picking leaves, loves to swim and is forever singing.
UNIQUE is an organisation based in the UK which networks parents worldwide, raises awareness and does research for children affected by Chromosome Disorders. For more information you can visit their website www.rarechromo.org
Bailey’s Mom and Dad (Kim and Connor) are the representatives for UNIQUE here in South Africa. They focus mainly on creating awareness here in SA, bringing families together to help them with their daily struggles and to let them know that they are not alone.
The idea behind TEAM BAILEY came from a casual Saturday morning run with Jeppe. I was running in a “Running for Bailey – UNIQUE” shirt, which sparked interest from my fellow runners. To create a greater awareness for my niece’s cause, we decided to have shirts made. Once we had the appropriate kit, Suretha came up with the brilliant idea of running 100kms in 10 days to help raise more awareness in South Africa. The response from the Jeppe running family has been amazing to say the least!! And Friday 24/06/2016 marked the beginning of our journey to 100kms. 10kms a day, for 10 days.
We have setup a webpage through UNIQUE in the UK where the public can see our daily blog and support “TEAM BAILEY” by sponsoring us for this run for a very good cause.