Monday, December 30, 2013

"It is more blessed to give than to receive"

Nothing like having your picture on the front page of your local newspaper--again!  Many thanks to Sean Dieterich for covering this story.  He wrote a great article.  This is Sean's third article he has written about our family and our mission to increase awareness about mitochondrial disease and raise money for a cure.  He's a great guy and an excellent writer!  

Helen Keller once said:  "Many persons have a wrong idea of what constitutes true happiness.  It is not attained through self-gratification but through fidelity to a worthy purpose."  This story written below describes someone who lives by these words.  It was an honor to meet this philanthropist.

 The full text of the article is included on this post below. I have also included a link to the article on-line if you have a subscription to the White Mountain Independent.



Belnap family visits philanthropist’s ‘Batcave’


Spencer Belnap (foreground) gets ready to take a drive in the Batmobile from the '60s television show "Batman." while his father Newell sits in the passenger seat.  The Belnap family which has three of four children suffering from forms of mitochondrial disease, including Spencer, has been raising money to find cures for those diseases.  Phoenix philantropoist Charles Keller heard about their story and invited the family to tour a Batcave he has made with his own time and money.
Sean Dieterich - The Independent | Posted: Friday, December 20, 2013 5:00 am
SHOW LOW — One family’s mission to find a cure for their kids caught the attention of a Phoenix philanthropist recently.  A philanthropist, as it turned out, who is a big fan of the Dark Knight, the Caped Crusader and the World’s Greatest Detective.  In other words, Batman.

The Belnap family; parents Newell and Becky and children Sydney, 19, Spencer, 16, Sierra, 11, and Seth, 7, was invited by Charles Keller to check out his replica Batcave, re-created in a 5,000-square-foot warehouse on North 20th Street in Phoenix. Keller has re-created the Batcave and parts of Wayne Manor, all from the ‘60s television show, using his own time and money.

Keller’s charitable organization is called Wayne Industries, after Bruce Wayne, the man behind Batman’s signature black cowl. The foundation donates to various children charities and takes sick children to his Batcave to have fun with friends and family.
Keller said it all started when he picked up a Batmobile from the TV show. For about five years, he said he and Wayne Industries have been making charitable use of that Batmobile and another picked up along the way. As for the Batcave, he said it took 18 months to build, and there is also something to do to improve it.

Wayne Industries, Keller said, has provided hundreds of thousands of dollars to over 60 children’s charities, and they are not slowing down.

“We don’t help children,” he said in an e-mail interview. “We help families. The Belnaps are a great case in point. Sure, the kids we serve have had medical misfortune, but that impacts everybody. Parents have financial, emotional and a zillion other kinds of stress. Some siblings must do with less attention. Grandparents, friends and extended family must all pitch in and ask ‘What could have been?’”

The Belnap family’s visit came on Oct. 13. The Belnaps, along with 25 of their friends and family, got the grand tour in a fun and interactive way.

It all started, Becky said, when Keller, posing as Batman’s butler Alfred, picked up the family in Phoenix in a sleek, black limousine. At Wayne Industries, the family filed into Bruce Wayne’s study to watch a video Keller made. During the video, an “emergency” broadcast interrupted things, and Keller moved the family into action. After Sydney pressed a button on a bust of William Shakespeare, the Batcave opened up, and the family entered the subterranean command center by sliding down firehouse poles.

Keller has filled the Batcave with the many gadgets and gizmos Batman and Robin used in their pursuit of The Joker, Catwoman, The Penguin and the other troublemakers of Gotham City, and they were all on display. The tour included exact replicas of the Batmobile, Batcycle and Catwoman’s Cat-illac Deville.

The family got to ride in the Batmobile, and one member of the family even had the pleasure of getting behind the wheel.  “Spencer just turned 16 and got his license, so he got to drive the Batmobile,” Becky said.

Spencer’s drive in the Batmobile just went around the block, around three-quarters of a mile in the industrial park, but photos taken of tour seemed to indicate he enjoyed every second.

The Belnap children chose which charities Keller and Wayne Industries would donate to. Keller donated a total of $2,500; $1,250 to T-Gen, a Phoenix institute researching rare childhood disorders, and $1,250 to the Foundation for Mitochondrial Medicine in Georgia. Sydney, Spencer and Seth have all been diagnosed with forms of mitochondrial disease, which affects the body’s ability to produce energy.

Becky said at the end of the tour, Keller gave all four kids a “key of hope,” a key on a miniature Batmobile chain. She said Keller told them the key was to the Batmobile, and to come back when they had their license so they could also drive it.

Newell said all of his children are doing “amazingly well” when it comes to coping with their diseases. Spencer has a mild form of the disease, diagnosed back in August 2012, but Becky said he has gone back to playing soccer and played on Blue Ridge High School’s junior varsity team.

Sydney graduated from Blue Ridge High School earlier this year. Becky said Sydney has Leigh’s disease, a progressive neurological disease, and functions at an 8-year-old’s level, but she volunteers with kindergarten children and enjoys it.  Sydney was diagnosed with Leigh’s disease at 16.

Seth, however, seems to have made the most progress. His doctor in Georgia said he is getting better, Becky said. Seth also has Leigh’s disease, diagnosed when he was 4, and is a first grader at Blue Ridge Elementary School. Newell said, “He’s not only surviving, but he’s thriving. That just doesn’t happen with Leigh’s disease.”

Keller said, “Clearly, Becky and Newell are great parents. Nobody could blame them and their kids if their outlook on life was dictated by what was on a medical chart. For them, however, a prognosis is not their life, but merely a small part of it.

“For my part, me and my family are made all the richer for having the opportunity to do our small bit to help them and families like theirs.” 

Back in February, the family created Team Belnap to raise money to find a cure for mitochrondial disease by taking part in athletic events. Becky said Team Belnap took part in the Tri in the Pines back in August, with Newell participating as a member of the relay team.

Newell said the family is still “actively involved” with Team Belnap. Becky said the team will take part in a marathon in Utah in June. “That is going to be our big fundraiser next year,” she said.

Keller said he was thrilled to meet the Belnap family and help them out. He said families like theirs provide a reminder as to why he donates so much of his time and money.  “The reason we like helping families is that most of the families we have met on this journey are brought closer together and made stronger by adversity,” he said. “Not to say this is a road anybody would choose, but true families who do wander this path are all the more appreciative of the things they have, and less bothered by what they don’t.”

Likewise, Newell said he and the family was thrilled to meet Keller and see what he does for sick children.  “It was an incredible experience,” he said. “And what this guy does, donates all his money and his time for kids with chronic, incurable diseases, this guy is an incredibly nice guy. He does it because he wants to give back.”


Reach the reporter at sdieterich@wmicentral.com


Sean Dieterich
Navajo County editor
White Mountain Independent
3191 S. White Mountain Rd.
Show Low, AZ 85901
(928) 537-5721, ext. 228

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.

Sunday, September 15, 2013

The Evolution of My Blog




On April 22, 2011, this introvert entered the blogging world to chronicle a day in the life as a father with children that have a chronic incurable disease called mitochondrial disease.  As a novice blogger, I was clueless and my expectations were low.  I found that telling my story was therapeutic for me.  Since then, I have discovered that my blog has not only been therapeutic for me, but for others too who suffer.  It has been educational for many who are on a similar diagnostic odyssey.  Now, the goal of this blog is to be a source of hope, education, and solace for those who have rare diseases.

Seth is now able to write letters.  He made name tags for us on post it stickies
On my second post, I wrote: "It's easy to write a blog when you know that you are the only one reading it."  Since my silent and bashful entry into the blogging world, this blog has turned into something that I never expected.  Each month, the number of pageviews continue to increase.  Now, on average, there are 1300 - 1600 pageviews each month.  

Seth getting his annual cardiology checkup.  Heart is stable.
I do not say this to boast or to boost my ego.  I report these statistics because it tells me that mitochondrial disease is getting more awareness.  People are learning about this disease.  It tells me that I can make a difference, but I could not have done this without you!  I continue to need you.  I ask you to subscribe to my blog, share it with your friends by email or social media.  September 15th - 21st is Mitochondrial Disease Awareness week.  I've always believed that awareness is the first step in finding a cure.  In the words of my little boy Seth in the video we recently posted:  "Help us find a cure!"  Thank you!!!
 
Me and Seth sporting our new glasses.  He insisted our glasses be the same.



#mitochondrialdisease #mitodisease

Saturday, September 14, 2013

Video of Seth being Seth. Help us find a cure.

Help us find a cure starring Seth.  Seth and I made this video for Mitochondrial Disease Awareness week which is September 15th - 21st.  Awareness is the first step in finding a cure.  Feel free to share this video and help us raise awareness.


Monday, July 22, 2013

Farewell Friends & Shipmates: The Pequod is Changing Course



When Abraham Lincoln left Springfield, Illinois in 1861 to start his journey for Washington, D.C. and the presidency, he paid an unforgettable and emotional tribute to his friends and neighbors in what is known today as the Lincoln's Farewell Address. 

As Lincoln boarded this special presidential train, he recognized most of the people in the huge crowd gathered outside the train depot. Ahead of him awaited unimaginable and arduous trials.  Trials in all aspects of his life--family, marriage  professional, political, and the all important task to save the union.  Behind him would be many people who helped shape his character and taught him many principles that guided his life and allowed him to be so successful.



The crew of the Pequod in front of a statue
of a great man
"My friends -- No one, not in my situation, can appreciate my feeling of sadness at this parting. To this place, and the kindness of these people, I owe every thing. Here I have lived a quarter of a century, and have passed from a young to an old man. Here my children have been born, and one is buried. I now leave, not knowing when, or whether ever, I may return, with a task before me greater than that which rested upon Washington. Without the assistance of the Divine Being who ever attended him, I cannot succeed. With that assistance I cannot fail. Trusting in Him who can go with me, and remain with you and be every where for good, let us confidently hope that all will yet be well. To His care commending you, as I hope in your prayers you will commend me, I bid you an affectionate farewell."

Becky and I made the decision a few months ago to resign from my job of 10 years and pursue other career options.  It was a difficult decision to make.  

On the steps of the Lincoln Memorial with my 
co-captain of the Pequod.  The Washington
 Monument in the background
Since January of 2003, I have worked for Blue Ridge Regional Clinic.  In many ways, this has been the ideal job for me.  I work hard and have a lot of time off to play.  This lifestyle has suited me well for a long time.  When the unexpected and uninvited guest called mitochondrial disease (that I often call Moby Dick) came into our lives in 2008, things have never been the same.  This disease has completely transformed our lives and has given us a new perspective on life.


  
Honestly, the decision to resign was unexpected, but a necessary change as we continue to search for Moby Dick.  Ahead of me and my family is the persistent war on mitochondrial disease.  Each morning when our children awaken, we give them a handful of medications and supplements.  We have no idea if these medications and supplements (often called a mito cocktail) provide any benefit.  These are extremely expensive!  This serves as an omnipresent pervading reminder that my children have a chronic disease with no cure and no effective treatment.  I would like to change that!

I have often spoken of our journey as being on a ship in the open waters of the ocean in uncharted waters.  I use analogies from the book Moby Dick, in my writing.  Moby Dick is a Great White Whale and Captain Ahab and his crew are on an expedition to find and kill this whale.  

The ship the crew are sailing on is a three-masted whaling ship called the Pequod.  I have used the story of Moby Dick and the Pequod to help describe our family's odyssey  in the unchartered waters of mitochondrial disease (see YouTube video).  Over the past several months, I have climbed the masts looking for the best course.
Our symbolic Pequod.  Seth made this boat with his
pre-school teachers shortly after he was diagnosed
 with mitochondrial disease.  This picture hangs on
the wall in his room.
The sails have been set in a completely different direction.  I plan to use my talents and professional abilities to help fight this war on mitochondrial disease.  

Where this will ultimately be, I don't know.  As we make our way to our final destination, I will continue my work at Pineview Hospital and do some part time work in the Emergency Department at Summit Regional Medical Center.

There will be no huge crowds waiting to hear a speech as I depart, but in my mind, there is an audience of people and experiences over the past 10 years that have helped shape my life that I will be leaving behind.

Some in the audience are my co-workers and colleagues that I have worked with over the past ten years.  I love these good people!  I've spent countless hours with them.  We have experienced death, life, marriage, divorce, love, disease, joy, sorrow, and hope together.

Photo taken on 2-28-13, International Rare Disease Day.  
My coworkers all wearing ribbons in honor of my 3 children
 who suffer from rare mitochondrial diseases with no cure
 and no effective treatments.  Missing from photo are Dale,
 Shawnna, and Dr Paxman

I would be ungrateful if I did not pay tribute to these co-workers and colleagues that I can honestly call my shipmates and friends. 

These shipmates have been with me as we were hit with Seth's diagnosis, his progression of disease, his uncertainty, and now his thriving.  These shipmates have been with me as we were hit with Sydney's diagnosis.  These shipmates have been with me when Spencer was diagnosed in what could be called a category 5 hurricane that did severe damage to our ship and almost caused our ship to sink.  I will never forget the love and support that I have felt from them all.


On the steps of the Lincoln Memorial viewing the
Washington Monument
I would be ungrateful if I also did not thank my patients who put their trust in me to take care of them and their families.  I have been deeply touched by your kind goodbye/thank you notes and thoughtful words as we've said goodbye.  I have been moved by your generous donations towards mitochondrial disease research in honor of our children to The Belnap Children Mito Fund and to Team Belnap: we swim, bike, and run because they can't.



Family photo before mitochondrial disease entered our world

Spring 2013
One final thought before I end this post.  Unity and strength is the word that best describes these pictures taken by Paxman Photography.  This disease has caused our family to bond and as a result, we have become stronger.  As we continue sailing on this journey in search of a cure for mitochondrial disease, we are unified and strengthened by so many of you.  As our family looks to the horizon, uncertainty and fear are omnipresent in the way of storms, mechanical problems with our boat, illness of another shipmate, etc, etc, etc, but we have hope and will move forward with courage.

Saying goodbye is never easy for me (I think I have separation anxiety).  So...my friends, colleagues, co-workers, and patients who I can call shipmates, I say thank you and bid you an affectionate farewell until we meet again on this journey called life.


Monday, July 15, 2013

The Futile Disability Fight

"Call me [Newell]...whenever I find myself growing grim about the mouth; whenever it is a damp, drizzly November in my soul; whenever I find myself involuntarily pausing before coffin warehouses, and bringing up the rear of every funeral I meet; and especially whenever my hypos get such an upper hand of me, that it requires a strong moral principle to prevent me from deliberately stepping into the street, and methodically knocking people's hats off — then, I account it high time to [find some epic single track, strap my 29er Trek HiFi mountain bike onto my jeep and go mountain biking] as soon as I can." 1


                            

The timing of this "hypos" was perfect. My oldest daughter, Sydney, has been staying with family in Utah for the past few weeks and it was time for her to come home.  I met my mother and father in-law in Moab, Utah to pick her up.  For those of you who are familiar with Moab, Utah, you know that this town is considered a mountain biking mecca. 

It's a 6 hour drive from the White Mountains in Arizona to Moab, Utah.  I arrived late Sunday night and got up with the sunrise so I could get spend half of a day riding my mountain bike.  I have found this method of exercise a fantastic way to get the endorphin levels up to naturally increase my serotonin and dopamine levels. This is my alternative to anti-depressant medications, although there was a time in my life when I was on these.  


A joyful reunion with Sydney in Moab, Utah after she has been gone for 1 month
On the drive up here, I thought a lot about my oldest daughter as she enters a new phase of her life.  She successfully graduated from Blue Ridge High School this year.  This was no easy task for her, but she did it.  With her IEP (Individualized Education Plan) and with many wonderful special education teachers, she did it.  Sydney was graded a lot on effort.  I am so proud of Sydney for this accomplishment!  


Sydney receiving her diploma

As a father, you always want the best for your children.  You want them to be happy and successful.  It pangs you when your children are sad or when people make fun of them.  Unfortunately, because of Sydney's disabilities, she was made fun of and did not have a lot of friends.  To those people who were her friends and teachers who took a special interest in her (you know who you are), I will be forever grateful for you.  To those people who made fun of her and refused to help her, I pity you.

I will never forget the first time that someone told me of the severity of Sydney's  mental/cognitive problems.   It was a psychologist she was seeing when she was in the 3rd grade.  He told us that Sydney would be lucky if she could work at Taco Bell and wanted us to prepare her the best way we could.  I thought, how the hell can someone make this kind of assessment on a child so young.  I was in a state of disbelief and I refused to accept his assessment.  In reality, I was in a state of ignorance.


Fast forward to the 4th grade and her first science project.   I love these projects!  Those who know me know that I love science.  This was my first science project as a father and I was excited to say the least.  I (we) decided to study yeast.  Most of you know that yeast makes bread rise.   Yeast is similar to us in that we both require oxygen and sugar (glucose) to thrive and grow.  This is our main source of metabolism.



Sydney's yeast experiment

We decided to see if yeast could metabolize sugar substitutes for an energy source. We tested normal table sugar, Splenda, Equal, Aspartame, and no sugar for our control.   This was exciting.  My children saw the true nature of their father and I went from cool dad status to "geek" status.  We put warm water, yeast, and the potential energy source into a bottle and put a ballon on the top so we could catch the carbon dioxide that the yeast would produce as waste (similar to us and other multi-cellular animals).  Well, it was no surprise which balloon filled up the most and our hypothesis was supported by the data we observed.


But more importantly, I observed for the first time the severe learning disabilities my daughter had and I was truly sad!  My daughter is the hardest worker I know.   She tried so hard to get these simple concepts of biology, but she could not do it.    For the first time, I realized the psychologist may have been correct in her prognosis.  For the first time, I new that some permanent cognitive problems existed and that she would need significant help, but I had no idea to what extent and what the future would hold.


Fast forward to the present.  Because of the severity of her mitochondrial disease, it was strongly recommended by her special education teachers and her doctors to obtain legal guardianship and conservatorship over Sydney.  


We sought the services of an excellent attorney, Brendon Rogers, who helped us get this done.  We were in unchartered waters with this and he helped us every step of the way.  During this process, our attorney strongly encouraged us to apply for disability.  He encouraged this for a few reasons, but ultimately, this was in Sydney's best interest so that if something ever happened to us, she would be taken care of. 


The guardianship/conservatorship process was smooth and uneventful.  The judge did not question one thing.  Sydney's court appointed attorney and the private investigator who came to our home and interviewed us all did not question anything.  It was evident that, unfortunately, this was necessary.


The next step was getting her disability.  The law states if you have a condition that prevents you from obtaining gainful employment you qualify for disability benefits.  Intuitively, one would think that if the state has found it necessary that you need a legal guardian and conservator because of your mental and physical incapacities that obtaining gainful employment is also going to be a problem.  

We filled out the paperwork and sent in the required documentation to support her case.  We fully expected to be approved based on the recommendations by several of her doctors.  Well...Sydney was denied.  We were told she did not meet the criteria and that we could appeal her case which we did only to be denied a second time.  I realized that I was David fighting Goliath.  I was standing there in my tunic fighting Goliath with my sling in hand.  I reached into my pouch for the smooth stones to throw, and realized my pouch was full of sand.  Realizing this battle would not be won with sand, I went and hired an attorney to fight and hopefully win.  We go to court next month.  

Having children with disabilities is never easy.  But there is something about these children that makes them unique and very special in my eyes and the eyes of God.   Unfortunately, there seems to always be a fight to be fought.  Unfortunately, there are those who are mean and ignorant to those with disabilities.  I love you Sydney and will spend the rest of my life fighting for you and your disease. 



1. Moby Dick by Herman Melville, Chapter 1