Wednesday, March 23, 2011 10:11 AM, CDT
Before I get started with a special post, I wanted to let everyone know that Gabe is doing incredible on the machine!  I posted on Facebook but I am posting the still picture of him jumping to the right here as well.  You can see the entire videos at http://www.hopeforgabe.org/photosvideos.html of him jumping, balancing on one foot and hopping on one foot which he could not do prior to the VECTTOR!  This is a long post but I have not posted in a while so please be understanding.  There are two things I am going to post below and the first is a special project that Turner had to turn in at school.  I am so proud of him but scared of what may be in the next paper he writes as he is starting to connect the dots with this horrible disease Duchenne!  Here is verbatim what he turned in and it was an in class exercise so we did not know he did it until it came home laminated.  Note the misspelled words as this is verbatim –

“Who Is Special To You?

Who is an important person in your life?  My 5 year old brother named Gabe is an important person in my life.  He is a very special boy because he was born with a disease called DMD (Duchenne Muscular Distrophy).  He has red hair and was born May 13, 2005.  Here are three reasons why he is special.

He was born with a terrible disease but he tries to be his best.  It is hard to do a lot of things like listen to what his teachers and what mom and dad say.  I love him so much though.  He is a very nice and pleasant boy, however it is hard to control himself and listen to instructions.  Everybody loves him, like Andrew and me because he is as delicate as a vase.

Second, he tries to be like me and play sports like me and be able to run fast but his weak muscles won’t allow him to.  He played baseball and soccer but he got tired during the beginning of the game or practice.  He loves to play with his friends but he can’t do a lot of things they do.  It is a tough life for him.  He has lots of ups and downs.

Lastly, he is so special because when people’s birthdays come up, on their invitations they say “Instead of giving presents, bring money and I will donate it to Gabe!”  So far, they have raised at least $800!  That is amazing!

I hope you know why I picked my little brother for this story.  He is a very special little boy and it is hard to think he has weak muscles. He looks like a normal boy but he really has something wrong inside.  I love him so much!  Who is very special to you?  By - Turner Griffin”

I can tell you it was impossible to read the above without crying!  Little boys should not have to write about things like this!  I know such is life but this disease impacts EVERYTHING in our life and it is now finding its way as a topic in Turner's schoolwork.  I am sure other little boys wrote about an athlete, grandparent, parent, or older brother that they look up to but not Turner.  He chose to write about his 5 year old younger brother who has made a tremendous impact on Turner because of his battle with a terminal disease!  I am so proud of Turner and though he does not know all of the details of the journey ahead of Gabe, he simply just knows he is special and he loves him so much!  I know it won’t be long before the questions become way more difficult but I must admit…WOW!  Gabe just has that effect on people.  Nothing is more evident than the next story in which Gabe touched a group of 10 year old boys of a basketball league in such a way that they got really creative and had a fundraiser!

The Oak Mountain Raptors are a group of 24 4th graders from the Oak Mountain school system developing basketball skills by playing together in competitive basketball leagues in Birmingham.   When the directors of the program, (Kris and Angela Dunn) were looking for a service project to remind the boys involved that it wasn't all about sports, they knew the organization they were going to focus on - Hope For Gabe. 

Here's what they did to get involved:

·         The Raptors set up a fundraiser that was pledged-based, with the kids/players soliciting pledges from friends, relatives and family members for every point the Raptors scored collectively in the last week of their season.  Their teams played 4 games that weekend, and they gave guidance to those that pledged with a target of 80 points (each team scoring an average of 20 points).  That made the math on the targeted pledge $10, and they also allowed people to simply pledge that amount or any other amount they'd like to as well.

·         The Raptors did an educational meeting where Traci and I went to talk to the kids about Gabe's condition, what the disease does to little boys, and why we need a cure.

·         At the same meeting, the Raptors coaches told the boys and parents what they wanted them to do - which is make calls (the kids, not the parents) to the people they know and tell them about our fundraiser - who they were playing for, why it's important, and then ask them for a pledge based on the number of points they scored that weekend.  The Raptors asked the parents to help the kids build a list of people to call, to email, etc., and asked them to dial the numbers for them and say hi first, but the goal was to have the kids to make the actual request.  That's all part of them doing the service mission and understanding what it takes to ask people to get involved through a pledge, describing the mission of the drive, understanding compassion for others, etc.

·         The Raptors provided a flyer describing what they were doing to follow up via email, a pledge sheet and a brief script the kids could use when they got on the phone with someone.

·         The Raptors target per kid: At least five $10 pledges for a total of $50 per kid, which would allow them to make a donation of over $1,000 to Hope for Gabe.

How did they do?  We joined the Raptors program at the end of season awards ceremony, at which time the Raptors coaches put the final number up for all to see (including the kids that knew the goal was $1,000) and delivered the following amount to Hope For Gabe......

Over $3,600!!!  Unbelievable!!! 

If you're looking for a service project to teach some lessons in life and also raise money for a great national cause with a local connection, the Dunns and the Raptors program highly recommend doing a similar drive for Hope For Gabe.  Contact us at the Hope For Gabe foundation and we'll put you in touch with the Dunns who are happy to provide all the pledge drive materials they used (email content, pledge sheet, script for the kids) so you don't have to start from scratch. 

The Raptors program won a title and finished second in another league this year.  It's safe to say their involvement with H4G will be as memorable to the kids and the parents as any game or trophy!  You guys absolutely rock!!!  Gabe is so fortunate to be in this community and to have all these folks working together to make a difference with our foundation.  It is evident more than ever that Gabe impacts lives even though he is not trying to!  Gabe, you are my hero!  Gabe’s Daddy

Thursday, March 03, 2011 11:27 PM CST
We often hear that “time is of the essence” and I understand that means SO much when it comes to our boys who have Duchenne but I did not realize that meant Gabe would be asking questions at age 5 that are very difficult to answer and our answers would play an important part along this journey!  He recently was talking about our cat Kelsey that passed away last year.   Gabe looked at Traci with the most inquisitive look and asked “Mommy, am I going to Heaven first?!”  Now I ask you this…I know children ask lots of difficult questions, but having three other children we have never encountered one like this.  Where did this come from???  Traci did a great job as usual and said “We will all go to Heaven Gabe, hopefully when we’re all real old.”  Gabe then said “I want to be in Heaven with God.  Will I be in heaven when I am 8 years old?”  Traci said “No…you will be in Heaven when you are 100!”  Gabe smiled and said “OK!”  What 5 year old asks this question??!!  Needless to say Traci was holding back the tears when she answered him and Cooper was standing their listening to it all which did not make it any easier!  The questions are starting to get more difficult and more frequent.  Last week when he was being hooked up for one of his treatments he asked “Mommy, when can I stop my treatments?”  Traci stated “well the machine is making your muscles feel better so we need to keep using the machine!”  Gabe then looked at her and asked “Mommy when will I be like Turner and be able to play football?”  Traci was not sure how to answer this comment but did a great job deflecting the answer.  It has been a tough week of questions and it is only going to get tougher but I want to end on a positive note.

The VECTTOR treatments continue to go well and Gabe is now asking to get on the machine right after dinner which is an incredible surprise.  He gets done eating and says, “It’s time for the machine…” and then he runs into the bedroom and jumps on the bed for his 80 minute treatment! I often write about the physical improvements but just as important are the cognitive improvements!  It’s almost impossible to say that Gabe would have naturally progressed to the point he is now if we hadn’t taken that trip to Texas.  He was starting to show signs of improving in all areas, but I have to believe this treatment has only accelerated his progress.  I think he’s able to think and talk more clearly, has more energy, more coordination, etc.  I have written in the past about Gabe and how he is not turning as many cards like he was in school before the machine (see previous posts), but I want to tell you about his newest achievement.  Gabe was starting to read some single three letter words but was having trouble putting sounds together before December 27 and day one of VECTTOR.  Traci had a meeting with Gabe’s teacher last week and she told her that she thought he was ready to move on to first grade b/c of how well he was reading.  What?  Excuse me?  Gabe Griffin??!!  We decided to put him to the test.  We got out our “Dick and Jane” book, just like we did with all of our other children, to see if he could read.  Not only can he read…BUT HE READ 5 CHAPTERS WITHOUT MISSING A BEAT!!!  48 pages!!!!  We could not believe it!!! Since that day his reading continues to improve.  His teacher said send him on to 1st grade with Addie!  What great news!  This was as exciting as the day he WILL graduate from college!  As additional insight to his cognitive improvements after being on VECTTOR, his writing skills seem to have improved tremendously since being on VECTTOR.  He is now copying words from the board to his paper whereas before he was just tracing letters.  One of the benefits of having Addie and Gabe in the same class is we can compare their school work each day.  Some of his worksheets now look as good as hers! 

At the end of the day, Gabe is constantly improving in many areas and as his parents who are with him everyday, it is obvious what the improvements are monthly.  I’m sure the “normal” child would have naturally progressed like this, but knowing the delays Gabe has, it’s amazing to see how fast he is catching up to his peers!  Gabe – you are my hero and there is no way I could sit there for 80 minutes taped up like a mummy with electrodes on my upper and lower body and never complain…yet you don’t complain!  You are teaching me so much and you are only 5!  Love you all my heart!! 

Gabe’s Daddy