Some families have shared their thoughts on why our support group is so important to them.
Being part of this group has allowed us to receive an automated external defibrillator (AED), which saved Aurora’s life when she went into tachycardia at home at age 2.
We learned about magnesium oxide from a member of the group, which has greatly improved Aurora’s quality of life in dealing with chronic constipation.
Another family in the group taught us about hypoglycemia, which has assisted us in being able to save Aurora’s life on multiple occasions.
We found this group after 12 years. I finally feel like we have a community where we really belong!
We didn’t find this group until our daughter was 5 years old and we were struggling to learn anything about our her condition.
Finding a group of people going through the same thing as us was life changing. It made us talk about her condition to anyone and everyone – to not be ashamed or scared.
The group changed our outlook on her life and we weren’t as scared anymore.
We joined this group after finding out my husband carries the CACNA1C gene mutation while searching for a diagnosis for our oldest son. When we learned more about this gene we came across Timothy syndrome and it explained our daughter’s symptoms almost exactly.
Unfortunately, our daughter had passed in her sleep when she was 3 and we were left with no clarification as to why. This group has helped us not feel alone on this journey to seek diagnosis and answers.
On this path to find answers for our son, we have stumbled upon the puzzle piece we didn’t even know existed. “It takes a village” rings true, and we found ours.
Thank you! I am feeling welcomed, a lot of new information, so much hope… A new world has opened up for us.