Tuesday, October 22, 2013

The Wayne Foundation, TGen and FMM. Bringing Hope to the Hopeless

Seth and his friend Shelby.  Two of TGen's miracle children
I need to start this post by thanking Emma, my niece, for her inspiring, powerful and heartfelt words she wrote in her post Becoming More Than a Bystander.  I have received so many kind words about your post.  Emma, you live what you write and are a powerful example to many.  I'm very proud of you!

I believe to truly understand what hope is, you need to experience the disparaging feeling of hopelessness.  I have written at length about times when we have felt hopeless.  Being hopeless is dark and lonely and a place that I don't like to go.  I would like to write about some events that have given us and so many others hope.

The past few months have not been filled with doctors appointments and testing at hospitals.  They have been filled with various events celebrating, raising awareness, and raising money for the cause that has taken over my life.

At the end of September, Becky and I were invited as guests to attend the Foundation for Mitochondrial Medicine's Hope Flies Catch the Cure annual event in Atlanta to help raise money and awareness for mitochondrial disease.  My dear brother Lynn came down from Utah to watch our kids while Becky and I went to this event.  This was the first time in several years that we were able to get away alone as a couple since the uninvited guest mitochondrial disease entered our life.  We had such a good time together and were able to meet so many people who are supporting the cause of finding a cure for mito.  

We were able to spend some time talking with Dr. Shoffner.  He has been so good to our family.  When he heard about our struggles with Sydney getting disability, I feel like he took it personally and took the battle on for us.  He went out of his way and took the time to fight for us.  His letter to the disability office went above and beyond the burden of proof and Sydney won her case without a hearing in front of the judge.
Becky and me with Dr. Shoffner, a true champion for mitochondrial disease
How Dr. Shoffner went to battle for us with Sydney is exactly how he fights for all of his patients when it comes to his research, finding a diagnosis, and searching for a cure for mitochondrial disease.  We love you Dr. Shoffner and thank you for all you do!

A few weeks ago, our children were nominated by The Wayne Foundation to experience a once in a lifetime evening of fun.  This was a surprise for our kids and surprised they were.  The Wayne Foundation, founded by Bruce Wayne (AKA Batman), had us come to Phoenix and Alfred picked us up in his limousine.  Bruce Wayne was not available for the evening because "he was in a different country helping the blind to see and the deaf to hear."  Alfred was our host.  

Friends and family in front of the Batmobile
who enjoyed this special evening with us
They chose to honor our kids because "you have all shown extraordinary strength and courage in the face of great obstacles."  What an honor this was.  We were picked up in a limo and I was sitting next to Seth who says:  "What in the world…a TV…phone…."

Getting picked up by Alfred in Mr. Wayne's limo
As we all sat in the back of the limo on our way to Wayne Industries and the Bat Cave, it was hard to keep back my emotions.  Courage defines my mito warriors and Becky and I have learned much from watching them face obstacles of a disease that is unpredictable and currently untreatable.
Becky wearing the Bat Lie Detector
Helmet.  It buzzed and lit up when
She was asked if she brushed her
Teeth last night
Sydney riding in the Bat Cycle
Spencer driving the Batmobile
Sierra and her friend riding in the Batmobile

The look on Sydney's face as she was riding in the side car of the Bat Cycle was priceless.  The joy in Spencer's face as he was told he got to drive the Batmobile was priceless.  The Wayne Foundation then made a donation to both TGen and The Foundation for Mitochondrial Medicine for mitochondrial disease research.
Our mito warriors with Emma who received
the donation on behalf of FMM
Our kids with our friends Dave and chloe
who received the donation for the
Mylee Grace research fund at TGen
Seth and our other children getting the Spirit of Batman Award from Alfred.
This is a key (key of hope) to the Batmobile.  When Seth and Sierra turn
16 and if they can drive, They get to come back and drive the Batmobile.
The final event I will write about is the Ribbon Cutting Ceremony for TGen's Center for Rare Childhood Disorders new clinic.  

This clinic is a place where children with rare undiagnosed neurological diseases can go and help find answers.  The most helpless and hopeless times Becky and I have felt is when we left a doctor's appointment and they told us they did not know what was wrong with Seth.  

                                           Seth looking for the tile he made for the new clinic  

The primary goal of this clinic is to help in the diagnosis and management of children with rare neurological disorders by the application of the latest in genomic and genetic technologies.  A place where patients can go and see Dr. Narayanana caring and brilliant physician, who will not only be their physician, but be their advocate.  We love you Dr. Narayanan and thank you for all you do!

Our family with two wonderful people and dear friends.  Dr. Narayanan and his wife
This is a unique clinic and in many ways the only clinic like this in the country.  I was asked by TGen to be on a panel with Dr. Narayanan and two others and answer questions about how TGen has helped our family.  I thought a lot about what I would say, and the best answer I could give was what Seth says:  "TGen rocks!"  

This event was very emotional for me as TGen has done so much for our family.  Many local dignitaries were there and spoke at this event.  
Our family with Miss Arizona 
who has made it part of her
platform to help TGen
Many of the scientist were also there.  One of the highlights of the day was meeting Brook Hjelm, Ph.D.   She is a scientist at TGen and came up to me and introduced herself.  She told me that she was growing Seth's cells and wanted to meet the family she was doing research on.  What an honor it was to meet her and discuss the work she is doing.  The work she is doing is fascinating.  She is growing out Seth's cells so TGen can test various drugs and see what effects is has on the mutated gene.  It almost seemed like she was describing something from a science fiction book.

Brooke Hjelm, Ph.D, Arizona House Speaker Andy Tobin,
 and Keri Ramsey, RN Clinical Research Coordinator
Seth and Sydney accompanied us for the day.  When we pulled into the parking garage to park, Steve Yozwiak, TGen's media/press contact, pulled up at the same time.  Steve is a great guy and our family has done several interviews and a video with him.  He asked me and Becky if we would do an interview for a Phoenix CBS 5 News channel that was covering the opening of the special clinic.  Becky experienced urinary incontinence for the first time in her life and I was…nervous.  I have come to the point where I'll do just about anything to help raise awareness of this disease.  We have done several interviews since this odyssey began, but none that were going to be on TV.  

The interview went well and it was fun to watch Seth being Seth as he also interviewed the reporter.  Thank you Adam Longo for covering this story and helping us raise awareness of mitochondrial disease and this special clinic.  Click on the link below or you can watch the news clip which I have embedded in my blog at the start of this post on the top upper right.

Belnaps Story and TGen's new clinic news story on Phoenix CBS 5

A big thank you to The Wayne Foundation, TGen and Foundation for Mitochondrial Medicine for bringing hope to us and so many others who have been hopeless.

Tiles made by Seth, Sierra, Sydney, Emma and other children

No comments:

Post a Comment