A few months ago, 7 year old Jayden was faced with a new and daunting assignment is grade 2.  He was told that the President’s position allows him to affect change that others cannot.  His assignment was to write a letter to the President asking for help with a difficult issue.  Here is what he wrote:

*****

Dear President Obama,

As a leader of our country, you are able to make huge changes. One thing that I really think you should do is create awareness for Prader Willi Syndrome. PWS is what my sister Jada Skye has. Also many kids in the world have it. When they turn around age 2 they start to feel like they are never full. Some kids and adults with PWS are made fun of for being obese. They also have low muscle tone. My sister Jada has a tube in her belly because she is not strong enough right now. Please let the world know not to make fun of anybody. It is not good because you don’t know what that person goes though. It is not easy for them. I hope one day she doesn’t have PWS. I love my baby sister Jada Skye who has PWS.

Sincerely,

Jayden

Grade: 2

*****

Sometimes youth has an innocence that gets to the truth faster than experience.  Jayden, wrote this before we entered our video into Michelle Obama’s video contest to fight childhood obesity.  You can help Jayden get his letter into Michelle Obama’s hands, by voting for our PWS Awareness video at

http://communities.challenge.gov/submissions/6800-take-one-small-step

Thank You Jayden.

We are making quite the splash and moving up to the front quickly.  As our mission is to eliminate the challenges of Prader-Willi Syndrome (PWS), it goes without saying that a visit to the White House will help immensely with our mission.  The awareness generated will allow us to connect with many more like-minded people.  The more smart, passionate and positive people we have working on this problem, the faster we can find the solutions we need for our children.

What you may not realize is a vote for our PWS video has a much bigger benefit than just eliminating the challenges for children with PWS.  Here are the top 5 reasons why you should “Vote PWS to the White House“:

Reason #5 – Show the importance of rare disorders

According to our friends at the Global Genes Project their are over 7000 rare diseases identified affecting over 30 million people in the US alone!  Its a staggering number.  In addition, 75% of those affected are children.  Individually, each of these diseases affects only a small number of people, but as a disease category, it is one of the most debilitating for our children.

These rare diseases can also hold the key to unlocking the secrets of our genes.  As William Bateson, a famous UK  geneticist, once said ‘treasure your exceptions’.  The study of rare diseases, the ‘exceptions’, gives us a beautiful opportunity to understanding common diseases.  You can read all about it here.

Reason #4 – Show what people and communities can accomplish by taking One SMALL Step

Living with PWS can be difficult.  Trying to find a solution to the constant hunger can be even harder.  In the face of these odds, our PWS community has constantly taken One SMALL Step forward.  We started with a single walk and now we are walking in over 50 cities.  We started with a single person saying, “I can make a difference”, and now we have an international community of thousands of dedicated supporters.  We started with a simple vision, and now we’re on our way to making it a reality.

This example, of starting with a clear vision and simply taking One SMALL Step in the right direction, can serve as an example to both individuals struggling with weight loss and a nation buckling under the costs of obesity.  The answer can be as simple as taking One SMALL Step.

Reason #3 – Help everyone understand you shouldn’t judge a book by its cover

Adults with PWS are commonly morbidly obese.  Most people would see a person with PWS and quickly judge them as “lazy”.  The general population doesn’t see the fact that people with PWS cannot feel full.  They don’t see how tormented our children can be after eating a full meal without their hunger disappearing.  They don’t see how hard our children work to control and manage their hunger.  They don’t know our children actually need less calories because of their lower muscle tone and don’t understand our children can eat the exact same diet as someone else, but still become obese.

If obesity is an epidemic, and it is, lets use PWS as an example to show that people who happen to be obese are people first.  Obviously the majority of overweight people do not have PWS and a number of people who are obese are “lazy” (just as their are a number of people who are skinny who are “lazy”).  My point is simply, you cannot tell why someone is obese simply by looking at them.  You also cannot tell who a person is simply by looking at them.

“You can’t understand someone until you’ve walked a mile in their shoes.”

Reason #2 – Provide an example for healthy living despite genetic challenges

As you know by now, people with PWS have the deck stacked against them in terms of obesity.  They have low muscle tone, they have difficulty moving and they cannot truly feel full … just to name a few of the challenges.  Despite these challenges, some people with PWS do manage to remain within normal weight ranges.  This is a delicate balance that takes an incredible amount of hard work not only by the individual but also by the entire community around the individual.  If it is possible for people with PWS to manage this (even though their are external controls), what an example this is for the general population.

If you want to know exactly how many calories are in that serving of mashed potatoes, ask a parent of a child with PWS.  If you want to know how to motivate people to be active ask a parent of a child with PWS.  If you are thinking you are a little hungry and might cheat on your diet … ask someone with PWS how they feel.

The first step in reversing the trend of obesity is believing it is possible.  If people with PWS can walk towards eliminating the challenges of PWS, surely the general population can run towards eliminating the challenges of obesity.

Reason #1 – PWS Research can Win the War on Obesity

As mentioned above, in research you need to treasure your ‘exceptions’.  PWS is a great ‘exception’ to study obesity.  By looking into PWS we can better understand the hunger mechanism which can lead to better treatments for obesity.  The objective is not to create a magic pill that allows people to eat whatever they want.  The objective is however to derive treatments that can effectively eliminate the genetic challenges a number of overweight people struggle with.  For the avoidance of doubt, let me state that a healthy lifestyle’ will always be required. (See point #2 above).  We do, however have the ability to re-shuffle the deck and bring it back to normal so people struggling with obesity don’t have the genetic deck stacked against them.

We can do this, if, we take One SMALL Step!

In Summary

If you are still reading … it is now time to Vote.  Go to the link below and:

• Vote today,
• Vote everyday until May 11, and
• Tell all of your friends to Vote PWS to the White House!

http://communities.challenge.gov/submissions/6800-take-one-small-step

Dante Rock Climbing

Over the March break Dante went to camp.  It’s a terrific camp that has a ton of different activities for the children.  One day Dante’s camp counselor called my wife to tell her that Dante climbed the rock wall!  You can see him almost at the top left in the picture.  When I saw the picture the first thing I thought was, If I could have seen this picture when we got the diagnosis of Prader-Willi Syndrome it would have saved me many sleepless nights.

If only I knew, Dante could reach the top.

If only I knew, how focussed Dante would be on achieving his objectives.

If only I knew, how competitive he would be.

If only I knew, how happy Dante would be and how much happiness he would bring our family.

If only I knew, how lovable he would be.

If only I knew, how much Dante would keep our whole family on track.

If only I knew, how funny he would be.

If only I knew Dante, I could have skipped a lot of the heartache and got right to loving him.

… but I guess that’s the challenge with life.  Most of the time we don’t “know” until its too late.  The key therefore, is to find something you can believe in.

I’ve learned a good place to start is to believe all of our children are awesome … because they are!

Once you child is a few years old these can be the trickiest questions on a parent’s mind.  If I tell them too early, will  they let PWS define them?  If I tell them too late, will they get frustrated with some of their challenges … will they hear about it from someone else?  PWS is pretty complicated, how do I explain it to my child?  How do I tell my other children?

Below is how we told our son, Dante.  It was pretty simple and worked out pretty well.  There are a ton of ways to manage this effectively and I’d love to hear what worked for you so please comment on this post.  Here’s our story …

We started early.  From the beginning we have had numerous discussions with Dante (7 with PWS) and Denzel (5) about the fact that everybody is different.  Daddy shaves, mommy wears make-up, Denzel likes soccer and Dante likes boxing.  We never highlighted one option as better than the others, we just consistently highlighted the fact that everybody is different.  Simple.

We didn’t pick a specific time to tell the boys, we just went about our lives and waited for an opportunity.  One day we were at home in our living room and Denzel complained about taking his inhaler.  The time had arrived.  Here’s how the conversation went:

Daddy – “Denzel, do you know why you take your inhaler?”

Denzel – “No”

Daddy – “You take your inhaler because you have Asthma and it helps you breath.  Remember Everybody is Different.”

Daddy – “Dante, do you know why you take your needle?”

Dante – “No”

Mommy – “You take your needle because you have Prader-Willi Syndrome and it helps you get strong.  Remember Everybody is Different”

Denzel – “Mommy, what do you have?”

Mommy – “I have Carpal Tunnel Syndrome”

Dante – “Daddy what do you have?

Daddy – “I have Tendinitis.  Remember Everybody is Different.”

Daddy – “Do you guys know anyone else who has Asthma?”

Dante/Denzel – “No”

Daddy – “Your uncle has asthma.”

Mommy – “Do you know anyone else who has Prader-Willi Syndrome?”

Denzel – “Yes! Jenna, Chloe and Kloe”

And that was that.  Pretty simple looking back, and nothing to worry about.  The key for us was starting early and using consistent terminology.  Now Dante and Denzel understand that Dante has PWS, but it really isn’t a big deal because Everybody is Different.

• Obesity in children rises from 6.5% to 20% in last 30 years
• Nine US states have obesity rates over 30%
• An unbelievable, 64% of adults over 20 are considered overweight or obese

The situation looks pretty grim.  So how do we reverse this trend?  Can Microsoft’s Kinect for XBox be the secret weapon?

Let me explain.

1. My 6 and 3/4 year old son, Dante (pictured above), has Prader-Willi Syndrome
2. Dante loves the Kinect

Still not clear.  Let me explain further.  We know there are a number of causes of obesity, which can broadly be categorized into behaviour or genetics.  Prader-Willi Syndrome, which my son has, is the most common genetic cause of Obesity.  What this means is his body doesn’t register being full properly.  Left unmanaged people with Prader-Willi Syndrome (PWS) would literally eat themselves to death.  In addition, people with PWS have low muscle tone, which makes exercising more difficult … as if  it wasn’t hard enough.  Basically, when it comes to obesity, the odds are stacked against Dante.

But here’s the main point.  Dante loves the Kinect.  I know I already mentioned that, but I want to make sure you understand.  If you haven’t seen it yet, the Kinect is a gaming system that is controlled by a video camera that tracks your body movements.  You don’t need a controlled in your hands … as they say in the commercials … you are the controller.  What this allows is people to get more engaged with the games and actually requires physical movement (e.g., exercise) in order to play the game.  My son comes home from school and does boxing, dancing or sports on the Kinect for over an hour … everyday.  He finishes sweating just as if he had completed a one hour cardio workout.

Still not convinced.  Let’s take a look at the math:

Let’s assume Dante burns 100 calories per hour of exercise on the Kinect.  Let’s also assume he uses the Kinect 350 days in the year.   Considering each pound represents about 3500 calories this means Dante will burn about 10 pounds per year simply playing the Kinect! (100 * 350 / 3500)

Now consider Microsoft has sold over 10,000,000 Kinects.  This means that every year the Kinect will contribute to people losing an amazing 100M pounds (10M * 10 pounds).

Finally if we consider there are 25M overweight children in the US (75 M children * 33% overweight rate), that means that the Kinect could help all overweight children in the US lose 4 pounds per year! (100M pounds / 25 M overweight children)

Okay, I know the analysis above is a little contrived, but it illustrates the point.  If your child has problems with weight or has PWS I recommend getting a Kinect.

If you are still not sure, checkout Dante winning the hurdles on the Kinect!

[For disclosure, I do not own Microsoft stock ]

Mistake # 5 – Making Comparisons

Here’s is my confession.  When Dante was 1 year old, I was at the book store with him and was asked by a couple with a young baby how old Dante was.   I quickly looked at their baby, gauged he was about 9 months old and answered “Dante’s 6 months old” … D’Oh!  I had already done the comparison, knew Dante probably wasn’t achieving the same milestones as the 9 month olds and didn’t want to get into the whole explanation of PWS.  Now this is one form of comparison, but their are a lot of different types.  Comparing to typically developed children.  Comparing to other children with PWS.  Comparing to our children without PWS.  We know everybody is different … regardless of whether they have PWS or not.  We know we should (and usually do) celebrate our children for who they are and what they accomplish.  We know these things and most of the times we act accordingly … but every now and then we make that comparison.   Either to make ourselves feel better or make ourselves feel worse (whichever we are looking for) … and that’s okay.  Next time, as you catch yourself making a comparison, simply think of Homer Simpson, laugh and move on with your day.

Mistake # 4 – Expectations

This is a tricky one.  Before Dante was born I remember thinking that I didn’t really have any expectations for my child.  If he wanted to be a doctor, musician or librarian, it didn’t matter as long as he was doing what he loved.  Of course when Dante was born I had to come to terms with the fact that I had expected to have a typically developed child.  Here is the tricky part about expectations.  Expectations that are too high can be damaging as we push our children to achieve something that is unrealistic.  Expectations that are too low could be even more damaging as we don’t encourage our children to grow.  To complicate matters each child has their own individual strengths and weaknesses and they develop at different rates.  It makes it pretty much impossible to have the ‘right’ level of expectations and not damage our children.  Frustrating.  So what’s do we do?  Don’t play the expectation game.  Accept our children for who they are and fiercely encourage them to achieve their full potential, but don’t put OUR expectations on them.   Once again when you catch yourself battling with expectations, think of homer, laugh and get back to living.

Mistake # 3 – Too Much Focus on the Child with PWS

As a parent we work to help our children as much as we can.  As I have talked about before, it can be difficult to be a sibling of someone with PWS.  When one of our children has PWS and needs help on a number of different (and obvious) ways (e.g., appointments, shots, …), it can be easy to pay less attention to the child without PWS.  We all know the child without PWS doesn’t need any less help or attention, it just isn’t as obvious as a child having a meltdown because the bus came at a different time.  I don’t think we ever consciously do this, but when you realize that simply taking your child with PWS to 75 appointments a year is giving them extra attention.  If you want some suggestions you can checkout my earlier post here.

Mistake # 2 – Take Control Away From our Children

It’s 6:15 pm and I have just rushed home from work.  Dante has finally got into his Taekwondo outfit and we are rushing to get out the door for his 6:30 class.  I’ve had a crazy day at work, eating my dinner in 5 minutes and guiding Dante out the door.  All of a sudden, Dante says he doesn’t want to be late so he’s not going anywhere.  I take a big breath and try to explain that the best way to make it to class on time is to leave right now.  Dante doesn’t buy it.  I see his emotion building, he looks at me and says, ” I don’t want to be late!”.  I consider myself a fairly patient person, but it was one of those days and I was just about to “Take Over” the situation.  I could almost hear myself, “Dante, we are going to class, NOW.  Get in the Car!”.  We had a schedule to make, I had rushed home, I had ate lunch in 5 min. … I wasn’t going to be late for this class.  You see we’re parents and we know best.  Of course, if you look at it another way, it really wasn’t about me at all.

I ended up taking another big breath and simply saying, “If we stay here we will be late or miss the class.  If you choose to go to the car, we can go to Taekwondo.  It’s your choice”.  Next I sat down on the stairs and waited.  About 1 minute later, Dante said “I need to think about this”.  I waited.  And waited.  About 2 minutes later (although it felt like an hour), Dante said, “I want to go to Taekwondo.  Hurry up Daddy”, and he ran to the car.  Now Dante doesn’t always make the best choices … but then neither do I.

Mistake # 1 – Not Taking Time for Yourself

If you travel a lot you have heard every flight attendant say “Put on your oxygen mask before you help your child with theirs”.  It can seem selfish at first, but its been proven to be the most effective safety procedure … and it works for all of us dealing with PWS.  It is very easy to get caught up in the day-to-day … running to doctor appointments, going to therapy,  ’educating’ our children’s teachers and everything else we do for our children.  It is also very easy to forget about all of those little things like exercising, reading a good book, going on a date, going after our own dreams.  So lets put it together.

• We know that parents of children with PWS have more than twice as much stress as the average person,
• We also know that stress can cause serious health concerns such as heart attacks, kidney disease and cancer, and
• What good are we going to be to our children if we are not at our best.

Don’t be a Homer Simpson.  Make sure “You do, what you need to do, for YOU!”  It’s not selfish.  It is actually the BEST THING you can do for your child.

I’ll see you at the gym tomorrow!

p.s. If you have made it to the end of the post … you need to read one of my favourite poems about special needs parents

In case you didn’t know we recently celebrated Denzel Day (pictured on the left).  Denzel Day is not his birthday, but simply a day to celebrate Denzel.  Dante (our son with PWS), gets a lot of attention at our Scotiabank One SMALL Step Walkathon (http://onesmallstep.fpwr.org).  As parents of a special needs child we also worry about our son Denzel (without PWS) getting enough attention, which led to the creation of Denzel Day.  Every year, Denzel picks the activity for the day and we head off as a family.  We went to a water park this year and both Dante and Denzel had a blast.

For us its a good reminder that having a sibling with special needs can be stressful.  A few common issues for siblings can be:

- Setting abnormally high expectations on themselves to ‘compensate’ for their sibling with special needs

- Feeling like they need to ‘parent’ or take care of their sibling, even though they are young children themselves

- Feeling a lack of one-on-one time with their parents

- Being resentful of having to explain, support, and/or take care of their brother/sister

- Feeling embarrassed about their siblings differences and them ashamed about feeling embarrassed

It is also important to remember that siblings will end up having the longest relationship with each other, and not with their parents.  For more information on the challenges of siblings you can take a look here or here

For me, what I have observed is that our PWS siblings are some of the most kind, patient and compassionate children I have ever seen.  Denzel routinely makes accommodations in games he plays with Dante to ensure everyone has fun.  He also uses these skills with his friends in different social environments.  What may be the most important part is to make sure our typically developed children live their own lives.  I can tell you Denzel loves soccer, super heros and math.  Really.  He is just as likely to ask you who is stronger Hulk or Superman, as to ask you what Infinity minus Infinity equals

As a proud father I could go on and on, but I guess all I wanted to say was … Happy Denzel Day!

Montreal Garage Sale for PWS Flyer

Dr. Andrea Haqq is recruiting children with PWS 5-17 years of age for three research studies in Alberta.

For more information about these studies contact Dr. Haqq’s research coordinator

Michelle Mackenzie at 780‐407‐7241 or michelle.mackenzie@ualberta.ca