Connecting Comfort

Just when I thought my boy was a part of that 3 out of 99 percent being diagnosed with a rare genetic condition--here it is; I have been able to find families on Facebook whose child(ren) have the same rare genetic condition. The only thing I was thinking of after receiving his diagnosis was WOW... what is that, how do we move forward, how will this affect his future & what’s next for him, does this officially separate him from other toddlers his age, and does this consider him a special needs child (which I asked)... I could go on and on. But as of today, I have accepted and I now own his condition and we're moving forward, one day at a time.

In the last 2 days I have been connecting with other families and reading their stories and I feel like that 3 percent has moved to at least 40. The feeling of knowing that my boy isn't the only one out here with a unique condition gives me such joy & adds more comfort. I've even joined a Kleefstra group, and from reading through the posts, it appears the families have become uniquely united. Unfortunately, I'm not able to say any of the families are local or near Washington, DC; but just knowing the option of conversing with other Kleefstra families is there; make me appreciate the uniqueness of this journey even more.

This has given me inspiration to create a local support group, not only for my son but for other kids & families with existing rare genetic disorders and health conditions.

#KickingKleefstraInTheDirt

#StayTunedForMySupportGroup