Lillian Grace Smith
Ben and Kathleen's 5 1/2 month old daughter, Lillian Grace, was admitted to Children's Hospital on March 7, 2012 due to concerns with her loss of mobility and muscle control. After extensive metabolic, neurologic, and genetic testing it was determined that Lily has a rare, degenerative genetic disorder called Krabbe disease. They have been told that she is only going to be with them for a short time. In that time her functions and mobility will steadily decline. There is very little that they can do except help Lily cope with the pain and surround her with love. Please continue to pray for comfort for Lily and strength for their family. Thank you all for your love, support, and friendship in this very difficult time.
For more information on Krabbe disease, please visit the following websites:
I would like to personally thank each and every one of you for your donations to help with Lillian Grace's medical expenses and continued prayers for our baby. Each of you mean so much to us and we thank God for you everyday. Your generosity in our time of need means the world to us but your prayers for Lily are all we ask for. We thank the Lord for you and pray that the Lord God bless you and keep you.
Update: Dr. Escolar, of Pittsburgh Children's Hosptial and a leading researcher in Krabbe disease, feels Lily is a candidate for stem cell transplant. This procedure, though not curative, will allow Lily to grow and develop well beyond the original life expectancy. Kathleen and Lily are relocating to Pittsburgh and will remain there for at least the next 3 to 4 months. Please keep them and the rest of the Smith/Blackwell families in your prayers as they begin treatment this week.
For those interested in reading Lily's journal, Kathleen has started a caringbridge site and would like to share it with you.... www.caringbridge.org/visit/LillianGraceSmith
Thanks so much to everyone who has jumped in to help out so far. Amazing! For those who do not feel comfortable donating online, please contact me for other ways to donate. Your kind words of encouragement are truly priceless.