My son has red hair. He has a little sister and a love of Legos and cars. And he also has a chromosome deletion.
When he was diagnosed at age 3, the geneticist said, whatever you do, don’t go home and Google “3p deletion.” Of course, that’s what I did, and I am forever grateful for it. I found Chromosome Disorder Outreach (www.chromodisorder.org), a non-profit dedicated to supporting individuals and families of those diagnosed with rare chromosome disorders.
I found others with my son’s same diagnosis, others with the same questions we had, some with answers and all with hope. CDO provides information, support, and helps in raising awareness in the US and abroad.
This #GivingTuesday, I am giving back to CDO in return for all they give to families… resources, support, awareness that families are not alone. I volunteer for CDO, helping with social media and newsletters.
This year, we are trying a photo campaign. Members of CDO are encouraged to print (or make their own) “I’m thankful for…” sign with #GivingTuesday, complete the sentiment, and post to all social media.
We hope to raise awareness of the beautiful children and adults living with these rare disorders. You are not alone!