Friday, October 22, 2010

As you can see by the photos, Cole-man may well find the cure himself. The little fellow has been to the doctor's office so much he knows the routines. Funniest thing is to see him blow on that stethoscope before he puts it on your chest. Just like a good doctor does.

He is spending the week with his Nana and Papaw this week. So we want get to see him.

He has a cat now. Brandi can't keep the cat out of the house for Cole hauling him in. He calls his kitty. Which is a new word and a good association. Those are all good signs.

His motor skills are good and he certainly can work the DVD player. Wears me out picking him up to change those THOMAS dvds.

Got an email from Fraxa today. They have three drugs that are already licensed for other uses that are showing promising signs in tests. Several large pharma companies are working on new drugs as well.

Things are going well on the drive to raise the $500,000 for the DORIS BUFFETT SUNSHINE LADY CHALLENGE in which Ms. Buffett will match with another $500,000.

Doris Buffett is the sister of Warren Buffett the multi-billionaire. She give grants and funding to many charities and research projects.

Check it out if you get a chance.

Sunday, October 17, 2010

Cole and Cale Spent Saturday with Marcia and me. Cole is learning how to pout when he doesn't get his way, which is not very often. You can tell who is teaching him that tactic. His big sister.
His newest word is "corner". I am guessing he is spending some time in the "corner" for time out.
They played outside in the swings until I took the swings down so they, Cole and Cale, would do something different. They played in the sand pile and rode in their little cars.
Cole and I rode to the golf course. He was really upset by the dogs and jumped into my arms and just screamed. I don't know if this is because of the FX or if a dog has scared him. It has been almost two years since our dog Cocoa died. But Cole loved to pet and play with Cocoa. I will have to ask Barbara and Brandi about dogs.
Barbara is Cole's Nana. Cole loves Nana very much as well as his Papaw, Kirk.
Cole's Vocabulary is really expanding and his sentences are becoming longer. His pronunciations are better. He now pronounces "Thomas" clearly instead of "omas". He is repeating his ABC and counts to 10 with a little prompting. Cole seems to flap his arms less but he still tugs at his lip and ear when he is tired and ready for a nap or nitey-nite.
A newletter came from FRAXA that tests on a drug had shown promise in helping improve cognition in trials. That is a promising and hopeful development.
That is all for now. Thanks to all.

Thursday, October 14, 2010

This is my grandson, Cole. Cole is a Fragile X child. If you don't know what Fragile X disorder is you are not alone. A few weeks ago neither did I. Now I am trying to bring attention to the Fragile X Syndrome. Hopefully to help Cole as well as the thousands of other children and adults who have this disorder. To begin Cole's story I must tell part of mine.

I have seen my share of life's ups and downs and know that everyone has their share of bad times and personal tragedies as well.

In 1981 two events occurred in my family's life, my father died at age 53 under tragic circumstances. Five weeks later my youngest son was born and was a source of joy and healing to my wife, my other two sons and to myself. But the time to share his joy was short, he suddenly died seventeen months later. Life was dealing out tough cards for my family and me.

We regrouped and moved on, then in 1988 I was diagnosed with colon cancer at age 36. I had surgery and they remove section of my colon, a softball size tumor and 8 lymph glands. The cancer was present in 6 of the 8 lymph glands.

The oncologist gave me a grave prognosis. My chances of 5 year survival was 20% at best. Therapies and treatments at that time were mostly experimental. I chose to forgo the treatments.

My son Ben was one and a half years from graduation from high school and Chris was three and half from doing the same. I did not know if I would live a year much less three and half. At that point I ask God to give me the time to get them both through high school and into college and I would ask for nothing more.

Then my wife's mother was diagnosed with lung cancer and within a few months she was gone. She had been the rock I had pegged my families future on if and when I died. She was an incredibly strong woman mentally and spiritually. I could not tell my wife but I was devastated as she had been dealing with both of us for a year and a half. Who would take care of my family? It was then I recognized that my Wife was as strong as her mother and had been the rock for both of us.

I was now a year and half from diagnosis and surgery. I questioned why would such a good person be taken and yet I continued to survive.

Then came Chris's graduation and Ben was doing well in college and my cancer was still at bay and had not shown up elsewhere. I was doing well.

Now to what all this has to do with Cole, Fragile X and me. I am getting there. Marica and I have four precious grandchildren. Our oldest, Andrew, is Ben's son and he looks just like his daddy and will always be special because his was the first grandchild. Our second grandchild was Erin and the little girl Marcia always wanted. Then came Cole and Cale. Cale is a precious little boy with the biggest grin, but Cole was a carbon copy of his Uncle Jay that died so many years ago right down to the blond hair and sheepish grin..

Cole was special from first sight in a way you cannot explain with words, but everyone who met him could feel it. For me he filled a big portion of the void in my heart. We knew he was a little different and he was not progressing as he should. But then came the diagnosis and then the long range outlook. Through all our travails, I had always seen a way forward and a way I could resolve the problems. Now for the first time I felt at a loss. Here was a beautiful child who would face challenges in his life far after the time I leave this earth. I cannot express the despair I felt.

Now for almost 20 years I had wondered why I am still here. I had only ask for a few years to complete a task. The task was completed and yet the years continued to roll by and relatively uneventful. Early in the morning after a few days of being a little more than depressed over Cole's diagnosis and prognosis a voice from inside me said, "this is why". I rolled over and woke Marcia, who as always was the rock I lean on. I told her I know why now. God knew that Cole would need me.

I am still here so I can help Cole. To help Cole I must help the Fragile X Foundation. There is a lack of funding for Fragile X research because it is relatively rare and it is not a fatal disorder although it can be seriously debilitating. I will not try to explain Fragile X syndrome here. Below is a link to the website that will do that if you wish to learn about it. But more importantly it will allow you to offer support to research and trials to find treatments and hopefully a cure.

You will find the FRAXA is trying to raise $250,000 to recieve matching funds from Doris Buffet's Sunshine Lady Foundation. No donation is to small and it will be doubled when the goal is met.

I don't know how I will help Cole in the future, but this is how I am helping today.
I hope you will find it in your heart to help Cole as well.

Thank you, so very much.