Grace read a book this past week to a 4th grade class in the Greenwich school system. The event was organized by Tami Serrino, a teacher and one of Grace’s tutors. Grace practiced beforehand and was a bit nervous at first, but she thoroughly enjoyed herself and did a great job. Tami is one of the many special people in our life working to make a difference with Grace. Thanks Tami.
Grace is improving and her recovery has notched upward. Grace is responding to the physical regimen we initiated for the summer months and more of her personality is on display. In short, Grace is feeling better. Grace is undergoing either PT/OT or swim workouts everyday, and the workouts are more rigorous than in the past. Despite her improved stamina and increased range of motion in her left side, Grace’s balance remains weak and she still cannot ambulate without supervision. Grace’s improvement is welcomed and we are hopeful that a year out from her second surgery that her recovery will hasten. There is a new video of Grace on the TV Channel Tab—check it out when you have a moment.
I am reading an interesting book entitled, Uncommon Challenges; Shared Journeys. The subtitle is Love, Hope, and the Community by Rare Disease Caregivers. It is a quick and easy read, but an inspiring one. The book echoes my experience as a caregiver and a parent that has tried to do something about finding a cure for a rare disease. All of the stories discuss the importance and empowerment of the internet, the love of community, the parents’ 24/7 advocacy of their disease, and the courage of their children. Some parents have achieved great success and dramatically accelerated the discovery of a cure saving children’s lives in the process. The book touches me and says that we are not alone and that great things are possible with love and hard work.
So here we go. We cannot allow another generation to pass and have the hemispherectomy as the cure for rasmussen’s encephalitis. No matter how great Grace looks, she has half a brain, lost her childhood, and will have a tough go in life. Please help me make a difference in other children’s lives and donate whatever you can afford. Grace will be taking up the cause and participating in a swim-a-thon for RE on July 22nd at the Middlesex Club in Darien. Joined by her friends and the community we looking to raise awareness and funds for the RE Children’s Project. Details will be forthcoming. Please support Grace as she will enter the pool and display her courage yet again.