My Visit with Ingrid

I will do my best Ingrid

I will do my best Ingrid

My friend Amy came to meet Ingrid too

My friend Amy came to meet Ingrid too

 I had a difficult start to my day yesterday.  I had a seizure at 7 in the morning.  I haven’t had one for many weeks so it was a bummer.  I wanted to feel great on the day Ingrid Harding came to visit me at my house.  She was so kind and respectful to me.  She was like a close friend.  She understands Rett Syndrome so well, so it was freeing for me to be with her.

If I could understand all the things she is hopeful about I would try and explain it, but it is something that I can’t describe so I will ask you to go to her web site to get more information about Rett Syndrome research.  She is a mother who has a huge heart and wants the Drs and the researchers to find a cure for Rett Syndrome.  She is very hopeful that it can happen real soon.  What she needs is more people to understand what it’s like to have Rett Syndrome and how it affects families.  Her daughter is 8 years old that has Rett.  Her name is Sarah.  She has a lot of breathing challenges like I do.  Ingrid has dedicated her life to helping everyone get involved in raising money so the cure can happen soon.  She said it could happen within 10 years with enough money to help them. I asked her how I could help and she said to keep telling my story.  I have some information that is helping Drs in Australia, so I continue to work on their research project too.  I love being able to help them.  It helps me feel better about the struggles in my life related to my disorder because I can share them. 

 My Mom read one of the brochures to me that Ingrid left for us. The front of it says: IMAGINE The Symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy and Anxiety Disorders…all in one little girl. I think since I don’t know what it’s like to have Parkinson’s I couldn’t have described it this way, but if it helps others understand what Rett girls face everyday, I am glad someone put these things together.  Please check out Ingrid’s information.  She is a wonderful Mom who’s trying to make the world a better place for so many who struggle.  She said the researchers feel they are close to reversing the damage, not only of Rett but of other disorders that are similar.  See what you think after reading their information.

 I asked my Mom to get this down for you: Girl Power 2 Cure is the organization that Ingrid Started to help raise awareness and funds for research. Here’s the link:

www.girlpower2cure.org

 Love, Karly

I decided to put my magnet from Ingrid on my van

I decided to put my magnet from Ingrid on my van

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