It is hard for Denise and I to believe that it will be a year at the end of August since our little girl Grace was diagnosed with Tuberous Sclerosis.  Last year when we signed up for the Step Forward to Cure TSC event we knew so little, we were barely out of the hospital a month with our little baby and such a scary diagnosis.  As we have learned, TSC is a genetic disorder that can affect multiple organ systems and in Grace's case, the genetic disorder is a new mutation.  Grace was initially diagnosed with TSC when she began having seizures at 3 months of age.  Since then, with our follow up medical appointments we have learned that Grace has cardiac rhabdomyomas (non-cancerous tumors), they are getting smaller the older she gets and have caused no problems with her heart.  With her Opthamology appointments we found out that Grace has a benign tumor on each retna, they fortunately do not impact her vision at this time.  Grace also has areas of skin on her legs that are called hypomelanotic macules (areas  of skin that appear lighter than the surrounding skin due to less pigment), at first we could only see a few, but with her summer tan...we have found new areas.  Our biggest struggle of course is her seizures, in the past year, we have had maybe 6 weeks with no seizures.  It has been a constant battle to get her medicine to therapuetic levels.  As we type this we are headed back to CHOP for an overnight video EEG to try to understand what is currently going on with our little girl's head.

There are many wonderful people in Grace's life, from all her doctors and her many therapists.  Early Intervention has been working with us since Grace was first diagnosed.  We started with physical therapy and have since added occupational therapy and a teacher.  With her year review coming up we are looking to add a speech therapist as well.  Grace is doing wonderful, she is trying to crawl, she has such motivation and desire to move.  She constantly wants to stand!  The other day she did say "bye bye" to her teacher, it was so great for her mommy to hear her little voice (I am sorry that I missed it)!  When all this first started someone in the hospital said to us, just remember, enjoy everyday, Grace will always be your Grace!  We enjoy everyday with our girl and our very thankful we have her!  Grace is a very strong girl and tolerates everything we have to put her through!  We hope for a cure everyday and until there is a cure we will do all we can to raise awareness and money for our cause.

Thank you for visiting my Personal Fundraising Page. Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to my fundraising efforts. Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

Love,

Dave, Denise, and Grace