May 12, 2009

Happy 6th Birthday Nicholas! We love you so much!

Nicholas celebrated his 6th birthday with friends and famiy on his actual birthday May 9th. It was at the Bounce U at his request as it is a familar place to him and he had a blast. I was very worried that he would not last the entire 2 hours for his party seizure free. He did surprised me and stepped up to the plate on this day and smiled the entire party. Nicholas has such dear and caring friends that all came over to him as we were bouncing and to say hello to him. The kids came right up to his face, I told Nicholas who they were and he just grined ear to ear to have his buddies around. It was such a sweet moment.

Nicholas’s eye sight and mobility had declined somewhat in the past 3 weeks. It has sadden our hearts to see this decline in Nicholas. But I think it makes us all want to work harder to fundraise and find a cure for him. He had another rough 3 week span (before his birthday) of a lot of seizures which really took a toll on his body. Our physician at Childrens hospital suggested admitting him at one point. But, we were able to work through the seizures with the help of the doctors and keep Nicholas out of the hospital and at home. Nicholas speech is more slurred and he has much more difficulty standing still. He has to keep moving. He will continue to go to physical therapy 3 times a week. He will be fitted this week for AEO’s (which are leg braces) as well as a walker. This disease is progressing… it makes me so angry! I just wished I could take his place so he would have a chance in life. He has so much to give this world!

I have also contacted my pediatrician to get Nicholas nursing care through an agency. I am with Nicholas 24 hours a day 7 days a week. I am afraid to leave him with anyone other than his dad, school nurse or his grandparents. He can never be left alone for a minute because he can get hurt.

Make a wish granted our wish for a service dog. We are placed in the Jan/Feb 2010 class from 4pawsforability agency in Xenia Ohio for the dog. We are thrilled! We wished it could be sooner as Nicholas may be completely blind by next January and I am not sure about his

mobility. The agency said it was not possible to get the dog earlier. The reason is due to the intense training the dog has to go through to be the perfect fit for Nicholas.

Our Promise to Nicholas foundation continues to meet bi-weekly through conference calls with updates on more and more up coming fundraisers as well as our medical connections. We hope to have our Tax ID number with in a few weeks to make our non-profit foundation official.

Chris, Nicholas and I completed our part of the video about Nicholas and Batten disease. It should be ready in June (next month). We hope it will be a useful video to educate about Batten disease to get the funding it needs. We will also try to add it to our web site… so keep checking back.

What is in the works?

Postage – WWW.Zazzle.com type in “Batten Disease postage” I made a postage stamp with Nicholas’s picture and part of the proceeds when buying these stamps will go to our foundation.

Candy Bars– We have a candy bars being made with Nicholas picture/Batten disease awareness. The proceeds again will go to our foundation. We we let everyone know when they are available. Email us if you have interest in selling them: www.promisenicholas@gmail.com

Wrist bands- We have green wrist bands made with “Promises to Keep” on the outside. On the inside it says ourpromisetonicholas.com. This is a very hopeful message to remind us of the promises we make to the ones we love. Price $3 each, 2 for $5. Email us if you have interest in selling them:www.promisenicholas@gmail.com

IGive.com– Go to this web site to do all of your on-line shopping. Type in “Nicholas Research Fund” and part of the proceeds from your purchase will go directly to Our Promise To Nicholas Foundation to find a cure for Batten Disease.

Bedford Road Race- Sat May 16th, John Tanner will again be running to raise awareness of Batten disease. He will be wearing the new green wrist bands, which can be purchased at the start of the race at Bedford High School.

Cut-a-thon-June 14, 2009. Sunday at Salon Thairapy, 1100 Hooksett road, in Hooksett, NH. Children’s haircuts for free, Donations accepted! call 603-641-9600 for information.

Fore Nicholas Golf Tournament Candia, New Hampshire– June 20, 2009. See tab fore more details