On Thursday, Sept 21st, John & Lillian were finally able to meet. Last year Lillian’s mom, Rebecca, reached out to me after her daughter was diagnosed with Catel-Manzke syndrome. It was an awesome feeling to finally be able to share with someone some of the concerns with John. Lillian is about 5 while John is 3 so it was nice to see how things may or may not happen in his future. Also it allowed both, Rebecca and I to be able to reach out to each other for ideas and such since there is limited info on Catel-Manzke.
Lillian is a sweet little girl. So are her brothers, mom, and rest of her family that were there. We met at Texas Scottish Rite Hospital for Children in Dallas. The kids played on the playground for a little bit while Rebecca, Thomas and I talked.
It was a blessing and an honor to finally meet each other. Hopefully we will meet again one day soon.