Sunday, May 6, 2012

Abilities Expo, Starlight & Avery

Yesterday I went to the Ability Expo in Edison, NJ. What a fun experience! I was so nervous at first... going into places with big entrances make me a bit queasy... I kinda choked a bit making everyone fuss bout me when we arrived at the place, but when we got inside I saw that there was enough space to roll around... and everyone greeted me with big smiles! That was enough to make me settle and feel confident.

There were so many booths to visit! We were greeted by our friend for Permobile and Mommy got a look at  a power wheelchair that is similar to the one I should get (fingers crossed). Daddy was drooling over all the mobility and transferring choices from nearby booths. We spotted our friends from Bussani Mobility and hurried there to say hello. A workshop about intensive physical therapy began, and I made sure to dig all the facts so I have many things to talk about with my PT and OT.  Afterwards, we found the booth for Motomed and chatted with Trae. I got greeted by a lady that was quite happy to see me. Turned out it was Karen Kain, a mommy to one very special girl (Lorrin) who is a big advocate for kids like me. My mommy missed talking to her, but me and Daddy had quite a blast as she is pure energy! She said my bright colors guided her to me! I wish everyone I meet were so honestly happy and cheerful. Karen, you are awesome!

We were quite hungry after that, so took a break to get some nourishment and replenish energy. Daddy got some kicks from buying me a colorful bib, I met two ponies, met a family who shared transportation woes with us, and then we listened to a horse ridding workshop. I absolutely loved the horse, and was quite excited to be able to pat it! This is nothing for Mommy and Daddy, as they are used to all sorts of animals (all too common in Puerto Rico) but I am a city girl and here animals are not everyday encounters! I was quite excited to get close to that big horse! I could not reach well, but she extended her neck towards me. That made me feel so special! Daddy took a short video of this... The first time I touch a horse! 

After the horse event we went on the hunt for face painting. We found the girl and she painted a lovely purple flower in my cheek! How did she know that purple is my favorite color? Hmmm... She added glitter to my flower, and it looked simply awesome! My sister was in line for that, but at the moment that her face was touched she riled up... Gosh, the little one is a tornado! With her applies the song about no: No touching, no holding, no nothing... I know, she is still to little to understand anything... At least she behaved while the rest of us enjoyed booths and workshops. After the face painting we went to our last stop, the switches booth. We checked all options for power wheelchair and computer accessibility... It seems that the best choice for using my power wheelchair should be fiber optics... so far I've heard that it will be ordered with mini joystick... I hope that it is the right choice... So, the day ended and we went back home. I hat-jacked mommy as it was a bit windy outside, and the way home was smooth. I had a long nap upon arrival! It was a perfect smooth-sailing day! I wish there could be more events like this... I definitively look forward to next year!

In other news, Mommy found out about an organization called Starlight Children's Foundation (nothing to do with Jem & the holograms, although they have to do with kids). These people have some programs that really rock. What they do? Well, "Starlight brings together experts from pediatric health care, technology and entertainment to create programs that help brighten the lives of seriously ill children and their families. Unlike any other charity, Starlight offers a comprehensive menu of outpatient, hospital-based and Web offerings that enable us to provide ongoing support for children and families — from diagnosis through the entire course of medical treatment". I'm looking forward to be part of their Great Escapes program. In their site they explain that Great Escapes "provide time to connect with other families and make special memories together". This is for the New York, New Jersey and Connecticut areas. I'm crossing fingers so me and my family are accepted, as this would mean a bit more quality of life for all of us. Thank you, Carmen, for this info!

Finally, I also have some news from the SMA World. A little friend of mine, Avery, passed away last week. She was only 5 months old. Most SMA babies pass away and the world don't get to know anything about them, their families journey, or the cruel illness that took their life. Well, thanks to her father, little Avery will be remembered by thousands and thousands. Even more, she became the lighthouse for our cause that many are following through the treacherous sea of SMA. Avery's blog, "Avery's Bucket List", took the world by surprise. Through the notes that her father wrote, Avery took over the hearts of many families around the globe. Avery's physical journey in Earth ended last week, but her memory and ethereal presence keeps on making strong changes that are nothing short of miraculous. Avery raised SMA awareness in an uncanny way, and her site has become the main beacon to fund Dr.Kaspar's gene therapy research. Dr. Kaspar's SMA Gene Therapy could cure SMA or at the very least offer advancements towards a cure for this genetic illness. Avery's cause hopes to raise $1,000,000 towards Dr. Kaspar's SMA Gene Therapy through Sophia's Cure, which is a non-profit organization so all donations are tax deductible. An anonymous donor will match every dollar donated up to $500,000 to help bring Dr. Kaspar's SMA Gene Therapy program out of the lab and into her SMA friends! So, CLICK HERE and help gather the money for this, in memory of Avery. Help us fight and win the battle versus Spinal Muscular Atrophy!

GOD: Thank you for keeping me here in Earth. Thank you for the daily miracles that you perform around me, and through me. Keep on blessing everyone that I know, and all those unknown faces that somehow touch me. Keep holding me in your arms, granting me strength, courage, love, faith, peace and happiness in my journey through life. Amen!