We are so glad that you are here.
Most of our amazing kids won’t have the same condition, but amazingly enough they tend to go through some very similar problems. Some kids are still very young and only just starting on their journey, and the older kids can help guide the way.
We have all had days when we just want to cry, grieve or understand what is going on, and then there are more days where we grin from ear to ear with praise for our child’s achievements.
All these ups and downs are consistent through life and especially when you are walking on an unknown path in the Rare Chromo Journey. Please make sure to ask questions, post comments or email us so we can add information.
You will never be alone, as has been said before – Alone we might be small, but together we are a force to be reckoned with.
Let us know if there is other information you think should be added. We appreciate all input and are thrilled that this is a Community effort not a one man show.
We are all in this together.