Aug 01

Journal – August 2012 – Kindergarten, summer time, etc…

Wow, my little man is 5!  I am still baffled at how time flies, and the fact that he will be starting Kindergarten next week is completely unreal to me!  Things are good for us now.  We have learned to balance our jobs, our fundraising events, our personal lives, our special family times, and our just being lazy times!  We had to learn this balance to keep our sanity.  Things can quickly become overwhelming because of people’s desire to help Zach and do fundraisers for PRF.  We appreciate ALL the support we have been given more than I could ever say.

Zach continues to do well!  His only physical complaint he has ever had was that his feet hurt (when walking or standing on them a long time).  So, we had him fitted for inserts and he uses them with no problem.  Wearing sandals (with socks, of course…Zach style) has also seemed to help.  He still takes physical therapy once a week and continues to take trial medication.  We are still waiting to hear what his next treatment will be.  He is so much fun right now, and full of SO MUCH energy!  He loves playing rough and wrestling, having wet play in the backyard (with water guns!).  He loves to read books and loves to watch his cartoons!  He hangs around the bigger kids at his day care school, and is very well known as a class clown!  Saying “goodbye” to the teachers if going to be heart-breaking.  The ladies at Lafayette Christian Child Care Center have been more than teachers…they are Zach’s fierce protectors.  WE LOVE THEM!  We are so thankful that Zach wakes up every day with a smile, and is SO much fun to be around.  We are blessed in so many ways!  We continue to take one day at a time, and focus on “now”.  There’s really no benefit to worry about tomorrow or what the future might bring.

If you are visiting this page, we appreciate your continued support and prayers, and thank you so much for being part of our lives!  Hope to see you soon!

September 3, 2012 – KINDERGARTEN UPDATE!  Zach is doing fabulous at school.  He’s fitting right in with the other children, learning the routines, and getting around just fine.  Stonewall has done an awesome job of making adjustments for Zach without making him feel “different”.   We couldn’t love his teacher more :)  We are blessed!

 

 

Jul 28

July 28, 2012 – 2nd Annual Zach Attack Ride Against Progeria

The 2012 Ride Against Progeria was a huge success! There were over 100 bikers that participated (almost double from last year), and we raised over $3,361.50 for the Progeria Research Foundation.  Zach had a great time riding his motorcycle and he especially enjoyed his gift of a riding vest from the Solomon Builders MRA.  The vest was even inscribed with his new nickname “Lil’ Moon”.  Zach also loved his new “Harley” dog :)  Our KY Chapter presented the 1st ever “PRF Spirit Award” and dedicated it to Jim and Angel Bragg.  The Bragg’s have raised a huge amount of awareness over the past several years.  They are dedicated to PRF and finding a cure for Progeria.  We are so BLESSED to have these people in our lives!  Thank you to EVERYONE who participated in this event…to the volunteers, to the people who donated auction items, to the people who bought auction items, to the riders and to everyone who came out just to say “HI”….we love and appreciate all your support!  We also want to thank the Man O War Harley Davidson shop, which is a class act all the way… your staff went above and beyond to make sure we were comfortable.  Thank you go for giving us a place to start and end this Ride!  Your support means the world to us!  See you next year, July 27!

Jul 08

The State Journal – Frankfort, KY

The State Journal – Frankfort, KY – July 8, 2012 – click here

The State Journal – Frankfort, KY – March 7, 2010 – click here

The State Journal – Frankfort, KY – March 4, 2010 – click here

The State Journal – Frankfort, KY – February 12, 2010 – click here

The State Journal – Frankfort, KY – March 12, 2008 – click here

The “State Journal” publishes the FIRST EVER article on Zach on March 12, 2008 to publicize the Frankfort Applebee’s Pancake Breakfast on March 15, 2008.  It was a great story and can be viewed at http://www.state-journal.com/news/article/3456922

Zach looks like any other baby. At 13 months, he’s learning to walk, stumbling clumsily across his living room floor. He says words like “mama” and “papa” and laughs when his parents make funny faces.

But three months ago, his parents, Brandon (Bill) and Tina Pickard of Lexington, learned that Zach isn’t like other children. He was diagnosed with Hutchinson-Gilford Progeria Syndrome, a fatal disease characterized by a rapid aging process.

Now Zach’s aunt, Kristin Pickard, who works at the downtown Farmers Bank, along with help from her mother-in-law, Kim Pickard, has organized a pancake breakfast and silent auction from 8 to 10 a.m. Saturday at the Frankfort Applebee’s to increase awareness about the disease and raise money for the Progeria Research Foundation.

“The disease isn’t as well-known as others, so they don’t receive enough donations,” Kristen Pickard said. “It’s too rare and too few people know of it.”

When Zach was 2 months old, his parents took him to a doctor for unexplained skin bumps. This began a nine-month ordeal of going from doctor to doctor, searching for answers to Zach’s unique symptoms.

Dr. Ann Lucky, a pediatric dermatologist in Cincinnati, was the first physician to suggest Zach be tested for Progeria. Like most physicians, Lucky had never diagnosed the disease before, but she believed Zach exhibited enough of the symptoms to warrant a test.

“At first we didn’t believe this was possible because of the rarity of the syndrome,” Tina Pickard said.

“But I knew by the end of the day, after looking at information on the Internet, that this is what he had.”
Exactly six weeks later, Zach was diagnosed with Progeria. Only one in 4 to 8 million children has the disease.

“We were shocked initially,” Tina Pickard said.

But then came acceptance.

“We realized God had chosen to bless us with this baby. And we are honored. Truly honored,” Tina Pickard said.

Hutchinson-Gilford Progeria Syndrome is a disease that accelerates the aging process when the child is 18-24 months old. Children with this syndrome die of heart disease at an average age of 13 after aging at a rate six to eight times faster than an average person. Approximately 100 cases have been formally identified in medical history

Because heart disease is the number one killer in America, finding a cure will not only help children like Zach, but it may provide keys for treating millions of adults with heart disease and stroke associated with the natural aging process.

Researchers recently discovered the cause of Progeria in 2002. They believe it is caused by a mutation in the gene called LMNA, which makes the Lamin A protein. The defective Lamin A protein renders the nucleus of a cell unstable and that cellular instability appears to lead to the process of premature aging.   Tina Pickard hopes that through this fundraiser, more people can know and understand the disease.

“Honestly, at the end of the day we have to be able to look at ourselves in the mirror and say that we’ve made a difference,” Tina Pickard said. “We want to educate people and create awareness within the community that this foundation needs money.”

Zach’s sister, Brittany Banahan, 15, is also helping raise awareness by setting up a Web site for her brother.

Zach is young enough that today the physical symptoms aren’t pronounced. However, as time passes he will begin to exhibit the recognizable traits of a child with Progeria: limited growth resulting in a short stature, hair loss, a small face, thin skin and a loss of body fat.

Although children with Progeria tire more quickly, they can run just as fast, laugh just as hard and live life with the same enthusiasm as other children. They just have less time to do it.
With his messy blonde hair, big blue eyes and infectious smile, Zach attracts attention wherever he goes.

“He yaks with strangers when we’re in restaurants and he draws people to him,” Tina Pickard said. “If you meet him you love him.”

 

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