I moved my blog

Hey everyone!

I have moved my blog.  You can now find us at:

http://www.rallyforreed.com

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Measuring Up As a Father

Pop culture has done the male psyche a great disservice.  If you watch a modern sitcom, the dads are almost always portrayed as bumbling idiots.  Nice guys, but somewhat inept at the same time.  Think of Ray Romano or George Lopez or any other father on one of these shows - they are all love-able
boneheads. 

But that is not the man I want to be.  And certainly, there are real men out there.  Men whose devotion to their families is utterly inspirational.  Dads that didn't listen when they were told to accept an disastrous fate.  Thank God for stubborn people.  Without them, those the question assumptions, challenge "authority", nothing would be different.  I would put these guys in my Dad Hall of Fame. 

The first guy is Mark Dant.  Mark's story to me is amazing because his effort has changed the life of generations of MPS kids.  He didn't except his son's "fate" when he was told his son had MPS I.  Specifically, that he should go home and expect him to die by mid teens.  Mark's son Ryan was three at diagnosis and he is now twenty two.  I won't rehash the whole story, it has been written several times.  I like this version.  Bottom line, Ryan is a grown healthy man and many kids today are better off because of what the Dants accomplished. 

I was lucky enough to have lunch with Mark on Wednesday and he is an awesome guy.  He is so humble and down to Earth.  Mark is actually a chief of police in Carrollton - a town close to me.  It would probably put a lot of pressure on him to hear this but he is a hero to me.  I certainly don't get the feeling from Mark that he wants to be anyone's "hero". 

When Ryan was diagnosed, Mark said he wanted to start a foundation.  He was told "don't bother, save your money for your medical bills - you will need it."  He didn't listen.  He funded the early research on enzyme replacement for MPS I. Because of Mark and Dr. Emil Kakkis enzyme replacement exists as a viable therapy for MPS and related disorders.   Mark is too modest to every say anything like that.  Dr. Joseph Muenzer explained that to me.

Then there is the story of Dick and Rick Hoyt (aka Team Hoyt).  The son was rendered a quadriplegic through brain damage that occurred during birth.    He was told to institutionalize his son because he would forever be a vegetable.  He didn't listen.  He and his wife watched their son's eyes and realized that he was intelligent.  They built a computer for him to communicate and he lived a full life, even graduated high school and college.   Want to know what is even more amazing?  His dad completed an Ironman Triathalon with his son.  WOW!  That is (swim 2.5 miles + bike 100 miles + run a marathon).  I can't even run two miles - and that is without towing a grown man.  That is unbelievable.  Through his undying devotion, his amazing love he gave his son something special: the feeling of belonging and of accomplishment.

First off, and on the lighter side, is this guy tough or what??  This dude looks like he eats nails for breakfast!  He's no spring chicken here either!  Wow.  Just amazing.

You can always look back at these stories and ask, "Do I measure up?" and you know what?  It is a completely unfair question.  First, these stories only share the triumph, they don't (and can't) convey they heartache that these families went through.  Nevertheless, one day I hope that I can leave a legacy like these men - in some way.

Reed and the Burning Bush

It is with a new perspective that I read the story from the Bible in Genesis 22.  This scripture tells the story of how God asked Abraham to take his son to the desert, find a burning bush and sacrifice the son he loved as a burning sacrifice.

Abraham loved his son Isaac but followed God's command.  Before he killed his son the voice of God said:

"Do not lay a hand on the boy," he said. "Do not do anything to him. Now I know that you fear God, because you have not withheld from me your son, your only son." And so Abraham was spared his son. If you are like me, you probably read this passage and wondered "when could this passage ever have meaning in my life?" I read it the other day and it now makes perfect sense to me.  We have to be willing to "give our family back to God".  Whether it is in one year, 10 years or 70 years they will all die and life on this planet makes no sense unless we believe in some higher power, something after this life.  Even our little children, as much as we think they are "ours" they really aren't.  God is only letting us borrow them and one day he will want them back.  It really our job to try and give them back better than we found them. For Reed, I have been agonized by his sickness.  Sanfilippo Syndrome is horrible.  It does really bad things to children that have it.  How can we ever rationalize such an illness?  You can't and that really *is* the lesson.  We can't make sense of why Abraham would be asked to offer his son as a burnt sacrifice and I can't make sense of why Reed has this awful disease.  All we can do is give our children back to God in a better spiritual condition than we found them.

A Father's Perspective on His Very Sick Kid

 

This blog entry is for my fellow fathers, those that have had to suffer the pain of hearing that one or more of their beloved children is terminally ill.  Our son Reed has Sanfilippo syndrome, which is a rare, terminal genetic disease with no known treatment.  The disease causes nueeuodegeneration and a child that appears to grow normally for the first few years will slow developmentally, regress and finally die typically around fifteen.

As someone commented the other day, online communities like Facebook have brought together these rare disease communities.  It is a mixed blessing.  While I get the benefit of knowing parents in similar situations I also learn about all the poor children that die and see the pictures of where my sweet boy might end up.  Reed, my son, is only three and almost no one would guess that anything is wrong with him.  We got an early diagnosis.  That gives us time to fight and gives purpose to my life.  For that I am grateful.  At the same time, it feels often like I am trying to lift a bus off of him.

While I have met a few MPS III dads, I know far more moms.  The moms are more active in the forums.  They constantly send prayers to one another and cherish the small victories that each other obtain.  These moms are awesome, my hats off to them.  I am in awe of their grace and strength.

I probably know less than ten Sanfilippo dads.  For all you others, I feel like I know you because I have taken a few steps in your shoes.  The experience of a dad may be different from the mom.  We typically see ourselves as the providers and protectors of the family.  Speaking for myself, the guilt of not being able to protect and help my son was overwhelming.   My anguish reached a point where I could almost not function.  I took medications, spoke to a therapist, anything I could think of to help.  The meds did help...but I did one thing that helped even more.

I forgave myself.  Stupid as that may sound, I sat down and told myself that I will do everything I can and that none of us are guaranteed a single day.  I should be grateful for this day I just had and give praise to God.

I am a Christian and in my faith we believe that God sacrificied his only son to cleanse away our sin.  I figured if God could forgive me I should try to forgive myself.  


Over the last two weeks, my conscious effort to remain positive has opened doors that I would have never expected.  Someday I will share these stories with you...but not yet.

One thing for sure has happened, people are more open to me.  Having a very sick kid causes some people to move close and others to run away.  No problem, I honestly shut down when I see really bad news about the older Sanfilppo kids too.  It doesn't  mean I don't love them, it is just that I can't deal with processing another loss right now.

My takeaway: whether you have sick kids or not, enjoy each moment with them.  This life is short.  Do your best, love God and forgive yourself.


All my best,
Roy

SCRF Gala: Pictures and Stories of Sanfilippo Families are Needed!

Elisabeth Linton's family set up the Sanfilippo Children's Research Foundation (SCRF) 12 years ago when their now almost 17 year old daughter Elisa was diagnosed at age 4.  Each year the gala raises several hundred thousand dollars to fund research, most recently that of Dr. Fu from Ohio and Dr. Biggar out of Manchester.

You can read more about the gala here.

This year's theme is "Cooking up a Cure", and they are using the theme to showcase the amazing medical strides that have been made in recent years.  There will be about 600 attendees, and Elisabeth has asked Sarah Hamza to reach out to our  families and inquire if we would be willing to share some photos of our kids, as well as any relevant details of our journey.

  

The specific request is for photos from as many Sanfilippo families as possible, so that supporters of the condition can come to know some of the faces of the children their fundraising dollars will support.  It would be great if you could share photos as an infant, at or near diagnosis, and now.  Smiling happy photos that show the joy of life we all have learned to cling to, in spite of the heartache.

If you are interested, please send an email with your story and photos to:

Sarah Hamza at info@stridesforsophie.ca

The event is being held on April 7th, so if you can get your info over to Sarah Before the end of March that would be ideal!

Thanks to the Hamza's and the Linton's for their important work!

The Beautiful Linton Family

Beautiful Sophie

The Good Search Challenge

Everyone loves a good challenge, especially when it is for a good cause.  We need your help to beat Sanfilippo Syndrome, a devastating childhood disease.  What could possibly be a better cause?

Yes, donations are great (see that little donate button to the top right, it works!).  However, if you can't afford to donate, you can still help.  All you have to do is replace your normal search engine with Good Search.  The money is coming in but we need to get even more users!  Every search you do will earn us one cent.  We need your help!  Make the switch and help other people switch!

Step 1: Start using good search
Step 2: Show one other person how to use it
Step 3: Share this challenge through Facebook, twitter and email!

Help us Kick Sanfilippo's Butt

Step 1: Use Good Search

Option 1: Install the Good Search Toolbar.
Option 2: If you don't like toolbars, Just set http://goodsearch.com as your home page
Either way, don't forget to say that you are goodsearching for "Team Sanfilippo".  You can see all the details in my previous post here.

Leave us a comment below and let us know who you are doing your search for!

Step 2: Show one other person how to use good search

We really need lots of people to use the search engine, the key is in getting lots of people to actually use it!  So, don't just email and hope for the best.  We need your help to actually show someone how to use it.  Help your spouse, friend, Mom, Dad, whoever actually set Good Search as their homepage (or download the toolbar).  If you don't ask, people will forget, get to busy, etc.

Find someone that uses their computer for work and actually does a lot of searching.

 Bad Example: Great Great Great Grandma

Nothing against Grandma but, if she is just learning to use that new fangled computer thingy,  this may not be the best way for her to help.  You see Team Sanfilippo actually makes money when you do a search (about a penny per search) so we need people that actually use their computer, a lot.

Good Example: People who Use Computers for Work

Cousin Irkle, that does a thousand searches per day = awesome.  See this guy, he searches a bunch!  We need him on board.  Just remind him that Good Search actually uses Yahoo! behind the scenes so he's gonna get great search results. 





Step 3: Share this challenge on social media

OK, now you can send out that email and post to Facebook.  See that little thing at the bottom? Click the little "F" symbol and post this to your Facebook page.  Click the envelope and we'll help you start an email.  The "T" sends the message out on twitter.  Just remember that you will most likely have to actually follow up with people and remind them to use it!

If you have a blog, please post a pointer to this page!  We need your help to raise money for our kids!

Thanks again,
Roy