Our dear friends, Kelly and Jake have put together a website with the help of some very talented people at an area church for Livia. We met Kelly and Jake back in October. Unfortunately, we became friends because one of their daughters, Livia, also has MPSIIIA (Sanfilippo) like Jayden and Brooklyn. If we would have met any other way, we would have been friends for sure! Kelly was the first mom I spoke to on the phone after our diagnosis was confirmed. It was an instant connection. Kelly and Jake were the missing link in our journey and over the last few months, Kelly has become my dear friend and sister in Christ. She is the only other person in the world I have connected with on such a deep level because we share a pain and joy that can only be understood by another mom facing Sanfilippo. God blessed us in huge measure when He placed people, who love the Lord, 1.5 hours away….close enough to Rockford (my hometown) that I get to see them whenever I am home. Sometimes I even make special trips to see them.
Liv has become like a 3rd child to me, in a way. I know I have said this before, and I feel so lucky to be around Liv when I can. Our children show us how to liv life. They also have a beautiful daughter, Finley. Finley is a carrier of Sanfilippo but is unaffected….Unaffected. As I write that, I realize in so many ways she is forever affected. Affected by fighting for her sister’s life.
I am always so encouraged by Kelly’s faith and the way she loves so deep. She is such a great mother and sister in Christ. We share so many ups and downs as we navigate becoming “case managers”. Bottom line, she is a blessing that I can’t put into words.
In support of Kelly and her family, and especially Liv….would you please support Kelly in anyway you can? We are on the journey together and they are just an extension of us. Jayden is even featured on their website! If you do nothing else, please visit their beautiful website and begin to LIV LIFE!
Love you….Hubert family!