Super Nash: Super Nash Fund

Monday, January 16, 2012

Super Nash Fund

The Super Nash Fund is something I feel very humbled to write about. Ever since Nash was born, we have had a lot of support from people. What surprised us was the people who wanted to help financially. Family members have offered and some friends as well. I am a hairstylist and I even had clients giving me "extra tips" for Nash. Chris and I were accumulating money for our little guy and decided we should start a savings account. So we did! We named it the 'Super Nash Fund' and it has been growing little by little over the last year or so. A few months ago, the girls at my salon approached me and asked if they could do a Fundraiser for us. Honestly, I was surprised and kind of uncomfortable. I wasn't sure about it and it was just so foreign to have something so generous done for us. They were all so excited, so we agreed! All the girls and I had t-shirts made that said "STYLIN' FOR SUPER NASH" with a picture of him on the front and a Super Nash "N" on the back. We all wore the shirts once a week between Thanksgiving and Christmas. I made a flier about Nash describing his condition and what his future holds (as far as surgeries and lengthenings). We put them at each station so the girls could tell their clients about our little hero. I actually loved hearing all of the girls tell our story. I just felt so loved and could tell they truly cared. The whole fundraiser was such a success and our little account began to grow! Its a wonderful feeling to know that people care and want to help us. We have a good start to saving the money needed for this long journey. We are Grateful beyond words.

"Styling for Super Nash"
All my salon girls :)
THANK YOU!!!

Since the Fundraiser at the salon, we have had other donations as well. One significant donation was from the Pella Business Women from Pella, IA. My mom is currently the president of this group and the members decided to make a donation to Super Nash Fund. What a blessing that was too!
All of this has shown Chris and I the amazing generosity of people around us and we are truly thankful. It has been such a great feeling and we hope to be able to pay it forward to others.
Thank You Everyone!!

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About PFFD

Proximal Femoral Focal Deficiency (PFFD) or Congenital Femoral Deficiency (CFD) is a rare, non-hereditary, birth defect that affects the hip bone and the proximal, or top of the femur. 1 in every 40,000 live births are affected by this condition. (per Nash's doctor, Dr. Paley) Nash's right femur is half the size of his left. His knee is affected as well. If we chose to do nothing, his right leg would be 10 inches shorter than his left when he is full grown. Nash just completed his first surgery..the 'Superhip' surgery in West Palm Beach, Florida. Dr. Dror Paley at the Paley Limb Lengthening Institue, is one of 2 doctors who perform this surgery in the United States. He not only created the surgery, but he is, by far, the most experienced. We plan on starting the lengthening process next summer, which will require us to be in Florida for 4 months. We need approx 8cm of bone growth so we will try to get 1mm every day. The reason we will stay in Florida is because Nash will have daily Physical Therapy at the Paley Institute. They need to keep a close eye on bone growth and range of motion during the lengthening process.

Nash will go through a minimum of 3 lengthenings in his growing years...at 3yrs, 8yrs, and 12yrs old. (approx) Our goal is to have 2 legs the same length as he goes into his adulthood!

Welcome to our LIFE :)

We really want to express how grateful we are for such wonderful friends and family. The love and support that we have received is amazing. We want to thank you for visiting our blog and hope that if you ever have any questions, feel free to ask. I try to keep the blog updated as much as possible. It's really been a great outlet and a way to let everyone know our progress and milestones. I hope that if you don't know Nash, or have never met him, you get a chance to at some point. He is truely the sweetest boy and his strength is a huge inspiration. We couldn't be more proud of our little man :)

If this is your first visit to the site, it's best to start at the beginning with the "It's a Boy" post. That makes everything easier to understand.

Wishing you Health and Happiness,

Chris, Caroline, Aidan and Nash