We are so incredibly overwhelmed with the love and generosity of our village near and far. We would love to be able to thank each of you individually. if you would, please, complete this short form so we can properly thank you: https://goo.gl/forms/XzXIlscZSIRhnCIs1
I wanted to post an update as to where our life currently is...
Shortly after diagnoses, we found a new home that will meet our girls' increasing medical needs and provide a space for my parents to live with us so that we have help and support as time goes on. Our current home is on the market, and we hope to be moving mid-late March.
Genetic Testing is underway for the rest of the girls. We hope to have results also in mid-late March.
We have set up a Fries Supplementary Needs Trust through Chase Bank to protect and preserve your gifts to our girls. This money will be used to ensure that we make memories while we still can, we also hope to set up a sensory gym for Cecilia in our new home, and I'm sure there will be several costs that we can not even fathom right now related to their decline in health. Jon is planning to attend a CLN3 Batten conference at the end of February to learn about what medical research is being done.
We have plans to travel travel travel this year. Florida, Disney, Washington State, North Carolina, and California, are just a few we have talked about. Both Cecilia and Lilly have qualified for a Make a Wish trip as well.
Overall, the girls are doing well for now. We have explained to them that they will go blind, and that they will probably start having seizures. Beyond that, they do not know what their future holds. While it is devastating to know that their dreams of growing up will never be fulfilled, we have to let them hope, and dream, and just be little girls right now.
Thank you again, from the bottom of our hearts. We are so blessed by your love.