Wednesday, June 30, 2010

Lady Gaga raises money for Rett Syndrome!

Woo hoo. Wouldnt it be awesome if an international known star as famous as influential as Lady Gaga jumped on board our cause. Lady for ladies perhaps. Below is an article about an aution benefiting the International Rett Syndrome Foundation though an auction for a huge concert. It's only for a couple of tickets and she may or may not have said anything but,"ok sure."
Every little bit helps. Here's hoping that the word will get around and this will be something people jump on to help save our girls!

June 29, 2010

Bidding For Good, a great charity auction site, is offering a once-in-a-lifetime opportunity for fans of Lady Gaga – the chance to attend the star’s concert in Toronto, plus meet-and-great passes.

The auction offers two “friends and family” seats to the concert at the Air Canada Center in Toronto on July 11 or 12, along with backstage passes. Proceeds from the auction will go to the International Rett Syndrome Foundation, a charity that funds research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services.

Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion. It is a unique developmental disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys. It has been most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay.

Sunday, June 27, 2010

Our friend Jennifer got married on Saturday. Here we are talking to Abby about Dancin with her Daddy. They say she is non verbal....yah right

Thursday, June 24, 2010

Video..Sideways..Of Abby walking at Josephs house on Saturday on a patterned floor. This girl does not walk unassisted outside of a few feet from her bench or couch and never in a unfamiliar environment. We are thrilled!

Friday, June 11, 2010


Abby has a bike

Last July we applied for an Amtryke for Abby through her physical therapist. In Mid April we got an email that Abby had been approved for a bike. One had been donated by The Noon Network and Ambucs out of Salina Kansas. The bike was delivered to her school and used there until we picked it up on her last day of pre school. Here it is. We absolutely love it! I have to get these pics developed and sent out with a Thank you card ASAP. Until then. Thank you so much Ambucs and Noon Network.
This is Abby's 1st time on it at home. It was so hot out. I cant believe how incredible this bike is. She is so safe. She is strapped in by the feet, 5 point harnessed and then the leather and bar padding..think roller coaster chest protector. This was the 2 seconds we were able to keep her hands on the handle bars. We are trying to make straps for her wrists to help her keep her hands on the bars and out of her mouth. Not an easy task!

It was so hot we waited until night fall to take her back out. Trying to peddle herself already!

Once it had cooled down we put the helmet on her. Poor kid still got very sweaty.
We are so HAPPY with this bike. When Abby was diagnosed and we were going through the grieving process of all our lost hope and dreams....I can specifically remember saying that we would never see her ride a bike...Makes me tear up even thinking about it.
We are so very grateful. Look for more pics and video to come soon!