Wednesday, June 15, 2011

Angelman Syndrome-Finding a Cure


As many of you know, our son Little J has Angelman Syndrome. Life with an angel can be very challenging, but along with the challenges come the amazing blessings that Little J brings to our family. As of today Little J is a first grader...soon to be second grader! He is doing so well in his class at school. He loves it so much! It's so nice to see that amazing smile on his face everyday when we take him to school. It's a testament to how wonderful the teachers and aides at his school are!

Little J is becoming quite the ladies man! He is in love with the girls! He is smitten with one particular classmate. Another angel who recently moved to our area with her angel brother and family....and who would have thought that they'd end up living 8 doors away! While his heart belongs to one.....he is not opposed to having an audience of ladies...I picked him up from school for a neurology appointment one day and he happend to be on the playground holding court with 4 adorable young ladies who were chatting with he and his aide. He was very happy to have their attention and was not too please when mom dragged him off the playground.

Little J just finished up his little league season with many of his friends from school. It was wonderful to have family come out to see him play and his teacher was at quite a few of their games this year too! It was a fabulous season with G and I volunteering as team organizer and coach....all while keeping Little J out there and managing Princess J and Peanut J! Thank goodness for our friends (and you know who you are!) for helping us out with the two smaller J's at games!

Later this summer Little J will be having a heel cord lengthening surgery. Currently he is a toe walker. He's very accomplished at it, but unfortunatly over time it will be become painful for him to walk and eventually he won't be able to. We are not looking forward to this, but it has to be done. He will be in a double cast for 6 to 8 weeks! Yikes! What is my active little angel going to do! I see a bit of grumpy angel time ahead! We welcome any prayers and good thoughts as this gets closer, that mommy and daddy can handle the anxiety and the recovery and that the surgery will go smoothly and recovery will be uncomplicated and quick! We also pray that the outcome will be Little J walking flat feet on the ground and for a succesful end result! We'll keep you posted on when the surgery will take place and how it goes...but start those prayers now if you don't mind!

I hope you will take a few minutes to watch the video above that I've shared. Foundation for Angelman Theraputics (FAST) has been working hard towards finding a cure. The science is there, the research is there, but the only thing missing is money! Vivnet has been running their Vivnet gives back promotion on Facebook and currently FAST is in the finals to win a $250,000 grant! This would mean so much to the work that FAST is doing! Here is a description of FAST (taken directly from the Vivnet Gives Back Project website):

The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy. The Foundation is committed to assisting individuals living with Angelman Syndrome to realize their full potential and quality of life. We are confident that our goals are now within reach and together, with your help, we will change lives. You are our driving force; please donate generously and bring us one step closer to realizing our mission. FAST is run by an all volunteer staff and board who dedicate their time and expertise towards finding a cure for Angelman Syndrome. Our operating expenses are generated through our annual Gala and through donations specifically for that purpose. FAST does not have any paid staff. Donations otherwise generated throughout the year go directly to supporting research aimed at finding a cure. Our goal is to bring practical treatment into current medical practice as quickly as possible. It is our hope that grants we fund will lead to additional research support from government agencies and other funding sources.

You can visit FAST by clicking on the link I've shared above! You will find all kinds of information on Angelman Syndrome and their quest to find a cure!

Ok, so now that you've caught up on Little J, read a little bit about FAST and Angelman Syndrome, I need a huge favor! See the Vivnet Gives Back Project banner on the side of this revived blog? Please take a moment and click on it and vote for FAST! This program will be running for the next 10 weeks and you get one vote per day. Please bookmark it and go back and vote every single day! The little clicks of your mouse everyday for FAST could mean a cure for Angelman Syndrome and provide a roadmap for cures for may other disorders/diseases. They really believe that finding a cure for Angelman Syndrome could lead to some answers for other disorders and diseases including Alzheimers and Autism! Please help us! I know that one day I could potentially hear the sweet sound of my Little J's voice!

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