Tim, Robert and I are running again for our friend Eva.
"YOU MAKE A LIVING BY WHAT YOU GET. YOU MAKE A LIFE BY WHAT YOU GIVE" Winston Churchill
Here's The Story:
We are running to help raise money for Eva. My daughter plays soccer with Eva's sister. Please support this cause-
Rett Syndrome is the most physically disabling of the autism spectrum disorders, primarily affecting girls, and usually strikes by 18 months of age. It is caused by mutations on the X chromosome on a gene. As the cascade of Rett Symptoms descends, a child loses acquired skills, normal movement and speech, then begins the long regression that may leave her in a wheelchair, unable to communicate or use her hands. Extreme anxiety, Parkinson-like tremors, seizures and orthopedic problems are common.Imagine having a beautiful, healthy daughter!Imagine her first words, her first steps, everything she does is a miracle. She reaches six months old, perhaps as much as eighteen months and she is the light of your life hitting every milestone.Now imagine that this perfect little girl, begins to change. Subtly at first. You notice that your little girl is not meeting those milestones anymore. The milestones that she did meet start to disappear.Slowly, her speech begins to disappear. She once had a few words she now screams in frustration.Toys she loved to play with lay abandoned as her hands won‘t do what she wants them to do: instead they have a life almost of their own: repetitive, uncontrollable movements. As parents you are worried and searching on the computer googling every diagnosis you could think of.Imagine her convulsing uncontrollably as the first of many seizures take hold of her.Abnormal muscle tone causes her to have abnormal posturing as scoliosis sets in.Her breathing becomes erratic, as she holds her breath for a minute at a time. She may stop walking altogetherShe may be put on a feeding tube because of the lack of oral motor skills. This lack of motor skills hinders her ability to coordinate food in her mouth.She will require 24 hour care for the rest of her life. At this time your worst nightmareAl and I will NEVER forget the day we received the diagnosis of Rett Syndrome. In our search for answers, we met other parents that have a child with Rett Syndrome and after meeting them we have learned that Eva is one of the “lucky, unlucky” ones. Eva is able to walk, and has not yet had any seizures and she continues to be able to eat regular food. We also realized that Rett Syndrome is a very rare disorder and there was not much for information available.Then one day we found out that a cure for Rett Syndrome is hopeful according to the scientists. In 2007 Rett Syndrome was reversed in a mouse model. Since then, Rett Syndrome has peaked the interest of many researchers all over the world.We found there was very little research going on because of the lack of funding. There is no grant money going towards Rett Syndrome research, and the only money that is funding the researchers for a cure is privately funded.This promising news that a cure is a strong possibility, encouraged us to start the Eva Fini Fund. In 2009 we began our mission.Our purpose was twofold, first to educate people about Rett Syndrome. Second to raise much needed funds for Rett Syndrome Research and a possible cure.TEAM EVA will be traning for the Hambeltonian marathon or Relay. All the traning that goes into this goal pales in comparison to the struggels that girls with Rett Syndrome experience everyday. Please help us in raising much needed funds.