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

Friday, October 11, 2013

Becoming More Than a Bystander

Me, (Emma) and my cousin, Seth
For any of you reading this post who follow Newell's blog, I'm Emma, his niece (Uncle Kevin and Aunt Catherine's daughter). When Newell extended the invitation for me to write this post, I was a bit hesitant. I didn't feel qualified to share my insignificant experience with Mito and how it has effected me compared to my cousins. But, for those of you who are LDS, as I listened to Elder Jeffery R. Holland's talk during the October 2013 Conference session, I thought about Seth and Sydney and felt impressed to share my experience with this terrible disease.

My story with Mitochondrial Disease starts when Seth was originally diagnosed. I remember my parents telling me that he had a disease and that was the reason he wore a bicycle helmet. 
Seth with his helmet and GoPro video camera
I don't remember ever being told what this disease was or what it did, or how it even effected Seth, Sydney, and, as we came to find out, Spencer. When we moved to Phoenix in February of 2012, I was ecstatic to be close to family for the first time in my life! My cousins came over several times for doctor's appointments between the time we moved in and December 2012, while I was essentially oblivious to the reason why they had to have tests.

Sierra, Sydney, and me at the Phoenix Marathon

Photos of the 2012 Phoenix Marathon were I ran the kid's race and helped with Foundation for Mitochondrial Disease Hope Flies booth

In December 2012, before we went to the AZ Mito Walk, Sierra showed me a video they had recently made about their journey through Mitochondrial Disease, but I still didn't understand this disease. Three months later, at the Phoenix Marathon, we worked in the Hope Flies booth but I still wasn't able to explain the disease to people who visited. Fast forward to the middle of August 2013, the first day of my eighth grade year. My Language Arts teacher was reviewing what we would be doing throughout the year. She mentioned that, after reading the book "Flowers for Algernon", we would be doing a project on diseases and disorders. I decided that I would do it on Mitochondrial Disease because I finally wanted to know what this disease is that has been such a burden on Newell and his family.
AZ 2012 Mito Walk
We finally got to the projects at the end of September. As I sat at my desk, the people next to me knew something was wrong as I stared at the computer screen, head in my hands, close to tears. I discovered that the form of Mitochondrial Disease, Leigh's Disease, that Seth and Sydney have is incredibly fatal. Sweet, funny, little Seth and beautiful Sydney. I just wanted to know why. I wanted to know why this would happen to these two amazing relatives. I wanted to know why it is a mystery about how much longer we will have Seth on this earth and why Becky and Newell had to live knowing that two of their children will not have normal lives and how they could even get up in the morning with the knowledge that this may be the last day they have with these precious souls.

I struggled with this knowledge, simply being a bystander, watching as my dear cousins struggled through this trial. I went home and read Newell's blog for the first time, read about the devastation they were struck with, cried when I read about Spencer's diagnosis and his giving up what he loved. I came back to school the next day, determined to no longer be an observer to their suffering. I researched and found out all that I could about Mito. I decided to start training for a half-marathon to be able to raise money for research done by the Foundation for Mitochondrial Disease as a Hope Flies athlete. I made a tile for TGen's new clinic called the Center for Rare Childhood Disorders and attended a TGen fundraiser at California Pizza Kitchen with my cousins. 
Holding the tile I made for the new TGen clinic, the Center for Rare Childhood Disorders
On the day I presented, almost everything went wrong. A few of my graphics were missing. A link I had wasn't working. I was nervous and I missed pointing out a few things on the Powerpoint. When I finished my presentation, I made sure to say how glad I was that Sydney and Seth were alive and that they were able to be in my life for the time being. While I got a good grade on the project, I was still not able to come to terms with the fact that my cousins would not ever have the life of a normal child and that they could eventually be killed by this disease that has no cure and no effective treatment. I prayed to know why this would happen to two inspiring, kind souls.

My answer came during the talk I mentioned earlier given by Jeffery R. Holland. During this talk, he said that Heavenly Father gives his strongest, sweetest souls the hardest challenges and that these souls will someday be perfect and no longer prohibited by these trials. I realized just how true this was for Sydney and Seth. They are two of the nicest, strongest, terrific people I know. I can't wait until the day I know them as the people they truly are and when they are no longer held back by this disease. I would love for this to be in this mortal life and the only way that could be is if a cure is found. Awareness needs to be raised. Over 2,000 people visit this blog a month.  If anyone who reads this post just tells two other people about the Belnap's story, that is more than 4,000 people who will now know about this disease in a single month. Please help raise awareness and save my cousin's life. Please, join me in helping any of those who have this disease and please, simply tell two other people about how dramatically this has changed my cousin's lives. Please help me save two inspiring, wonderful people. Please join me in becoming more than a bystander and become an advocate for those who have Mitochondrial Disease.