Hope Versus Help - The Quest for Balance

This particular blog has been a long time in coming. I started writing it the weekend after Philip had his hunting trip through a wonderful organization called United Special Sportsmen of America. (You can read about this in one of my previous blogs.)

We had such a great weekend with Philip’s hunt. But to even suggest that it was relaxing would be a bald-faced lie. It was worth every ounce of effort, but it was effort. It was packing his stuff: Pillows and blankets and a urinal and a toilet seat and chux and his pump and his bags and his tubes and his syringes and his Ensure and his clothes and his outerwear and his IV tree and his aluminum ramp and his charger…and our stuff, too. Some food, some movies. Over the course of three days this would all be taken down and packed, taken in and set up twice. During our stay, it was carrying him to the toilet, to the ATV, to the stand numerous times. And despite the good time, I came down with an awful bellyache and migraine on Sunday, that left me weak as a kitten. (Now you KNOW that the weekend was a positive experience, because it trumped all the physical toll!)

That Monday morning found me reading about the latest breakthrough in research on Duchenne, the very affliction that was responsible for my weekend. All the joy of it…(I don’t suppose we would have had this experience if Phil were a “normal” kid, now would we?)…and all the work of it.  I read with great interest about how stem cells have now been identified to be the key element – not to a cure, but to further research on how we can perhaps effectively TREAT some aspects of this disease. There is a difference. The researchers are, of course thrilled, and stated, “Finally, now we can get a handle on what is going on, and learn how best to target future therapies. Having a mouse model that mimics the human disease will benefit all in the field and is very exciting for patients.”

And finally, they were courteous enough to give credit where credit is due and informed us that: “The research was funded by the American Heart Association, the National Institutes of Health, the Muscular Dystrophy Association and the Baxter Foundation.” 

Really. Imagine that. Apparently the AHA, the NIH and the Baxter Foundation (A philanthropic organization for many causes) have all thought that this was a worthy cause, too, and threw their money into the Duchenne research hat. Awesome!  And this is but one study. How many more are there? I don’t need to Google that to find out – there is a LOT of research going on out there, funded by far more than just the Duchenne specialty groups.  Super! And so today I read that because we finally made a mouse as sick as a human and figured out the hows and whys of that, that as a patient this is “very exciting”? I beg to differ.

This does not excite me at all. Quite frankly, I find it rather depressing. I feel like the kid on Christmas who just opened the last gift and all they got were socks and underwear, “That’s it? This is all there is?” Yeah, yeah…I know – we all NEED socks and underwear. I get that. But all year I was stoked to get a new sled! A puppy! A Red Ryder BB gun! I was promised that if I was very, very good this year, I would be rewarded at Christmas time with some goodies under the tree – and this is it?

Perhaps a more grown-up analogy would be putting a lot of money into the stock market, and hoping that your investment was really paying off, only to find that you’ve made a whopping .25% interest on your investments all year!  Whoopee!! Now, I wouldn’t stop investing, but I would probably begin to diversify my portfolio, right?

But that just doesn’t seem to be the perspective in the Duchenne world right now. On the contrary, we want to throw more and more money into this pool. But what I am proposing is that we as a group think about diversifying our investments. Why? Because I’ll tell you what excites me, as the mother of a DMD patient. A new ramp. Yeah…Phil has to slip and slide down our plywood ramp all winter, because funding for the ramp finally came through the day before Thanksgiving, but the town I live in won’t let us build it until the neighborhood gives the OK to allow us to build it closer than 25 feet from the street, and the variance appeal has taken too long and now the ground is frozen and buried under snow.

I would be excited about being able to afford a new van, because when it rains outside, we have to start it every few hours to make sure that it will still start.

I would be thrilled about a new shower chair so that we would not have to bathe Phil on a plastic bistro chair with a Nascar seat cushion for stability. The state has to mull this one over to determine if it’s necessary.

I would be happy as hell if we could afford to have pull-ups at night instead of some state-issued Kleenex consistency paper diapers that hold approximately four tablespoons of fluid before soaking the entire bed.

I would be crying tears of joy if there was an awareness campaign in schools to let people know that kids in wheelchairs are people, too. I would like to see standing room only at a workshop for parents of special needs kids to explore resources available to them. The one I was signed up for was cancelled due to lack of support.

What I want for Christmas would be for every kid with Duchenne to have another wish come true, instead of just one per terminal illness, thank you!

How about funding a “toymaker”, to make toys for the ALL the kids with Duchennes, from the youngest to the oldest, from adaptive toys to adaptive technology for the computer?

Anyone for the idea of starting a fund for housing for Duchenne men, so that these intelligent young men don’t have languish in state run nursing homes? How about staffing them with people who are well trained to deal just with this disease? How about a pool to pay the caregivers who truly care a better wage?

I am still stoked about Philips hunt through USSA because here is an organization who realizes that the assets that we have that we receive from the generous people who give to the Face of Duchenne, need to be diversified. Fund some research…by all means. But how about a little nod to the quality of life of the boys that are trying to LIVE in spite of this disease?  

And why do we feel that we who have been touched by Duchenne are the ones solely responsible for funding the research, when there are clearly already a number of benefactors out there funding it already? How much of that wheel do we have to reinvent?

Can we take a clue from the Reeve Foundation? It’s a half and half thing: Half to figure out how to fix it, half to figure out how to live a fulfilling life with it! “Today’s Care, Tomorrow’s Cure”.

I understand the desire to DO something. It burns a hole in my gut, too, to be so bullied by this disease.  But why is it every call to action is a call to fund research? I don’t understand that at all. The tragic fact is that this is NOT what is going to fix THIS GENERATION of Duchenne boys. We’re on a clock, here…and the fact that we just screwed up a mouse enough to start trying to fix it just doesn’t cause me to do a little happy dance.

Are there any Brady Bunch fans left in existence? Well, I am unashamedly one of them. Growing up in big family, when TVs took 5 minutes to warm up and there were only three networks and some strange signals called UHF and VHF – we took our programming seriously, and the Brady Bunch was a great offering. 

Sitting here today, I am reminded of a particular episode, where the oldest boy, Greg, was offered the chance to be the new pop star: Johnny Bravo. What starts as a family musical affair soon waxes myopically in Greg’s favor, a choice made by the money-grubbing record execs who see him as the next meal ticket. It all goes to his head, family chaos ensues, and in the long run, Greg is deflated to lose the opportunity for one reason: He didn’t fit the suit. The Johnny Bravo Suit did not fit his frame. The fact that he may have had talent was a moot point – it was all about the suit. But when we take the entire “moral of the story” into account, that was a good thing. Because the writers of the storyline are pointing out what the suit represents – and how our hero is not fit for the suit. Greg Brady did not represent the money, or the power, or the greed or the corruption that the suit represented. And to shorten it up further still, let’s just stop at the money. It was all about the money. The Brady’s were not about money. They were, of course, about family, and love and moral values and Americana. And they all lived happily ever after.

What makes me sad is the fact that our tactics, as the Duchenne Champions, seem to have taken on a bit of a Johnny Bravo twist. One group recently shot a public service announcement using a very handsome 28-year-old gentleman with Duchenne as their representative. After hours of what appeared to be excellent footage, a good chunk of it was shit-canned. Why? Because he was deemed to be too old. They wanted a younger victim. Evidently, the suit did not fit.

No, the suit they want on their mascot is young, and cute, with rosy cheeks and all the promise of a life that could be LIVED. They want an image of what they could do if only they had your money…not what happens realistically even though we have more money than god right now already. A little boy on crutches elicits the “Awww”…while a man with a tracheostomy and ventilator elicits more of an “Ewww”. It’s all about marketing, and marketing is all about money. They want the illusion that this little boy can be mended and made whole – they certainly don’t want you to see that in 20 years that same little cherub will look just like this. If he lives that long. They apparently see this man - who is fighting so hard to just to live - as a testimony to the failure of research, and that is as wrong as the day is long.

To ad insult to injury, the feedback coming back from one Duchenne awareness campaign is not really what we wanted to hear. Apparently we have missed the mark in making the public aware of what Duchenne REALLY is, and what they can do to help remedy it. It was perceived by one blogger as merely a name change to a scary disease. And it’s doubtful that anyone with the perception that we are trying to polish a turd will donate to eradicate the same.

If we want better PR, then I guess we need to write better PR material. And maybe we don’t need to try so hard to paint a picture with dramatic effects. Maybe we should just be real. Maybe we could go “reality TV” on the general public and let them see what life is like where the rubber meets the road on this thing. But maybe, after seeing that reality, people would rather donate to concrete offerings to the people they see, rather than to research they cannot. Let’s face it: A man in a lab coat will never elicit the donations that a little boy in a wheelchair will. But where does the money go? It’s not to the little boy. They end up being the Trix rabbits – the mascots for what they may never taste. “Silly Rabbit – Money is for Research!” Lesson one in good commercials is to pay your actors well. Even if, in this case, they are not "actors"...they are our children.

When people see starving children on TV, they want to know that the money they sent bought FOOD for the child – not a research team to figure out how to feed the child. Maybe that is why the Hollywood crowd (and their copious amounts of money) is far more supportive of things like Make-a-Wish and Feed the Children and Habitat for Humanity, or helping the homeless, and women’s shelters. They want their money to make a difference TODAY in the lives of a fellow human being. While government money tends to be spent on think-tank projects and research, the people whom you and I share this planet with on a daily basis really desire their contribution to go to quality of life – to those less fortunate.

I can’t tell you how many times people tell me, when they find out that I have a son with Duchenne, that they put money in a Fireman’s boot, or bought a Shamrock, etc. I thank them sincerely, but I am quietly crestfallen at the idea that there is a mother out there with three Duchenne boys who has no means of transportation, and how much that money would have meant to her toward the purchase of a van.

With just HALF of the money we pour into research, every Duchenne sufferer could travel the world, in planes designed for wheelchairs. They could all have everything they need to keep up with the “walkies” in school. They could have shots at expressing their creativity through adaptive technologies in the computer world. They could have vehicles that get them from here to there, and attend the same social functions as everyone else. They could have homes where it doesn’t take hours to simply get up and dressed for the day. There would actually be a point to having a get-together for people with Duchenne, because they would actually be able to attend them. Does anyone think that the power wheelchair soccer clubs are not awesome? Maybe there would be more of them if we were not so busy just trying to survive financially in the face of this disease, and it was made as simple for us to take our wheelchair-bound boy to practice as it is to take the “normal” kids to piano lessons.

Could we maybe drop a coin in the cup of practical research, to the physical and occupational therapists who are trying to find better ways to help extend the life of the ever-waning muscles through exercise, and better mechanicals to help a kid continue to feed himself after he’s too weak to lift his hands to his face anymore or hold a fork?

You see…this is where I live. If you just had a toddler diagnosed, this is where you will be, too. Like it or not. Dare to dream of a cure, but in the meantime, life consists of chopping wood and carrying water, and it is going to require all the resources that you have in energy, emotion, spirit, and finance. And ignoring that won’t make it go away. Hoping for a cure will not change the fact that there currently is none. Throwing money at a hope for a cure will not change that, either.

I can fairly hear the hackles raising on those who have invested their blood, sweat and tears into research. Let me say it for the record: I am NOT anti research. I am pro research. I am FOR funding research to cure Duchennes.

Having said that, I am even MORE for finding a ways to live with it. For finding ways to enhance the quality of life for ALL of those who live with it. I am MORE for coming up along side and assisting my fellow warriors in this fight. And if any of the above mentioned ideas (and the host of others I have in my head) seem like pie in the sky, I can only point to the mouse in the wheelchair and ask you if the probability of fixing THAT seems any more plausible.

Having said all of that, I would be remiss in my fussing if that were all I were doing. It’s entirely too easy to just complain about what I perceive to be a lack. The question comes to me: Well, just what do YOU propose?

I have thought about that for a long time. In between life, Mark and I have come up with our contribution. It boils down to this: All money given by corporations or individuals needs to be received by a charitable corporation, the venerable 501(c)(3) which enables the monies to be tax exempt. ANYONE can start one of these. They are not exclusive to the rich, the mighty, or the well connected. Nope. If you’ve got a legitimate cause (or can write up a mission statement  that sounds legitimate), with three things and a government approval, it’s all yours. Oh…those three things? Time, energy, and MONEY. Ironically, the three commodities most taxed in a Duchenne parent’s life. However, it CAN be done. And I want to be a part of that.

Taking advantage of video, here, in 3:00 minutes, is what we are attempting to do:

It’s very slow going – we simply have no more money at this time, and lawyers are expensive. People who want to commit time and energy on advisory boards are few and far between – and I totally understand that! The people that need this the most need another commitment like they need a hole in the head! Our time is stretched to the maximum. But we WILL do this. It WILL happen.  We’re not hooked up enough to get our commemorative ribbon on soup cans, but we will do what we can, and we will get to the point where we give new meaning to the slogan, “No child left behind”.

There is so much money out there. And most of the government money goes to research…of all kinds. Some are pretty ridiculous, (e.g. do we need to study the effects of cow farts on the environment?), but many are legitimate research projects, medical research, etc. Since the government is pretty generous with its research grants, couldn’t we take money from the private sector and direct it towards goals that the people donating it actually wanted to see happen? Like vans? Like tangible, bring-a-lump-to-your-throat gifts for those who need them? Not just at Christmas, but every day of the year?

When I hear about $60.00-a-minute research, I can only think to myself, “Could I have an hour of that time?” – because I would be able to get Empower Wheels off the ground and then some.

There are so many things that money can’t buy. We can’t buy a cure to this disease. We can pay to find ways to research it in the hope of finding a cure. But to put it in perspective, give me $250,000, and give the research team of your choice the same amount. Let’s have an accountability session in six months. I will be bringing in a full house of boys, men and their families who are smiling, happy, and blessed by that particular windfall. What will the researchers bring to the same table? Nothing that will provoke tears of happiness when you hear the stories of lives enhanced TODAY by something money COULD buy.