If that isn’t the face of an angel, I don’t know what is. With a smile like that, it could melt your heart. Ysabel is the daughter of a dear friend of mine and she is truly special in many ways. Ysabel has been battling Rett Syndrome for 5 years now. At only 7 years old, she is the true definition of strength and an example for us all. What is Rett Syndrome? To be honest, I had never heard of it before meeting this family either. Here are some quick facts about Rett Syndrome:*
- Debilitating neurological (movement) disorder that predominantly affects females.
- Baby girls are born “normal” but begin to lose acquired skills between the ages of 1-3 years old.
- Caused by a single gene mutation that leads to underproduction of an important brain protein.
- The most severe form of autism.
- The leading genetic cause of severe impairment in girls – most cannot speak, walk or use their hands.
- Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.
- As prevalent as Cystic Fibrosis, ALS and Huntington’s.
- Another little girl is born with Rett Syndrome every 90 minutes.
- Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.
* more information on Rett Syndrome here
Currently there is no cure for Rett Syndrome, but it is CURABLE!!
So what can you do to help? The Shober Family is hosting this fantastic event on October 19 in honor of Ysabel and all those that suffer with this debilitating disorder. Cocktails and dancing for a good cause? I can’t think of a better way to spend my money. Yes, this is in NJ for all those far away, don’t fret, you can still make a difference with a donation here. Please take the time and think about how you can help these beautiful children and their families to find a cure once and for all. Oh and if you are on Facebook (which I know you are) go over and give their page a “like” to help spread the word and raise awareness for Rett Syndrome. There is also a Facebook page for the October 19 event here 🙂 Lastly, if you would like to visit Ysabel’s page, please go and visit here!
Thanks so much for stopping by. PLEASE take the time to read about sweet Ysabel and her story. Have a great day!