Our youngest son, Jace, has an extremely rare genetic disorder. He is one of only a few hundred in the world with 22q11.22 Distal Deletion. When doctors tell you they are unaware of your child’s disorder, and that there is a lack of research on it, it leaves your lives open to a lot of unknowns and uncertainty. As his mother, I’ve spent many years fighting with medical professionals and specialists to have his rare disorder acknowledged and accepted. This is why a day like World Rare Disease Day matters to us. This is a day that is dedicated to educating the world about rare genetic disorders, and helping to raise awareness and support. Our family takes full advantage of this platform, and we ask our friends and family to share Jace’s story and wear denim ribbons or jeans on the day. I’ve spent the last few weeks sending out ribbons, as I usually do this time of year, but something amazing happened in my search for support this year.
A friend who teaches at WNIS, Breanna Caldwell, asked for a ribbon to support Jace. I decided to add two more ribbons for my son’s own teachers, Lisa Vaughan and Andrea Myers. I felt guilty, as they never asked for them, but sent them anyway. What happened over the course of the day left me speechless. Jace’s teachers decided to not only wear the ribbons in support of my son, but to make shirts to wear. I was left in awe over their kindness and compassion for our son. Their vision for how to support him was far from finished. By the end of the day, these two amazing women had not only gotten orders for shirts from other teachers, but permission from the principal to allow the entire school to wear denim in support of our son and rare disease awareness. Now, instead of three amazing women wearing a tiny ribbon, an entire school has come together in support of one little boy.
So, I hope the community will join me in saying thank you to these incredibly caring educators. I fell in love early with the ESE program at WNIS, but I never fully expected this amount of love for my child from them!To say ‘thank you’ will never be enough. I cannot express my gratitude to these amazing teachers or to Mrs. Dorsey for allowing this type of support in her school. In our lives, we have so much uncertainty, but the one thing I know I will never have to question is the love these teachers have for my child.
For anyone else interested in participating in World Rare Disease Day, please wear denim on Monday, February 29th. For more information on how you can help families with rare genetic diseases, please visit Globalgenes.org.
