Food Could Kill This Little Girl

"Hungry?"

You are asked this simple question all the time. Lunch time at the office, grabbing a drink with friends - food is central to being a human. It is a vital part of our daily routine. It is as much a part of our socialization as talking.

For our daughter Brooke, food is the most deadly thing in her life.

Brooke was born with a very rare, very cruel genetic disorder called Prader-Willi Syndrome, or PWS. A few missing genes in one small region of chromosome 15, and havoc results. Stunted growth, low muscle tone, behavioral problems, scoliosis, sleep disorders, intellectual disability, low metabolism - even excess tooth decay.

But the worst part is the hunger.

A gnawing, ceaseless feeling of starvation that never goes away. People with PWS can never feel the satisfaction of a full belly. No matter how much they eat, no matter what they do, the hunger is there. There is no cure. There is no treatment. And it all too often leads to severe consequences, including death.

If you're a parent, imagine this: your child hasn't eaten for 3 days. They come to you crying, pleading for food - and you have to tell them no. This level of hunger is what a person with PWS always feels. And this is what it's like to be a parent of a child with PWS - every day of every year for their entire life.

The constant hunger, low metabolism, and weak muscles deliver a triple-blow in the form of rapid weight gain. Left unchecked, children with PWS will eat and gain weight until they quickly reach the point of morbid obesity. Complications like diabetes or even heart failure before they reach their 20th birthday are way too common.

And left unsupervised, with just a moment's lapse in a caregiver's attention, people with Prader-Willi Syndrome can, and all too often do, eat until their stomachs burst and they die.


Keep Moving Forward

It was 2 days after Christmas. The phone rang. My wife and I looked at each other.

"It's the geneticist."

Upon her birth, Brooke had spent over 2 weeks living in the hospital with a feeding tube because she was too weak to suckle. In the following months, we carted her floppy little body to every type of specialist doctor we could find looking for answers. It was now five months after Brooke's birth, and we still had no idea what was wrong with her.

Just before Christmas, the geneticist had told us they might have an answer, but needed to verify. Now we hesitantly picked up the phone to hear the results.

"Your daughter has a disorder called Prader-Willi Syndrome. We'd like to make an appointment to talk to you about what this means. Until then - you should stay off of the Internet. The information there can be pretty scary."

We didn't need to go online. My wife's career was working with special needs children, and she knew all too well what PWS meant.

She explained it, we cried. I researched it, we cried. Things really seemed hopeless. But then my wife, with her amazing strength and character, steeled herself and made an announcement to me that I will never forget.

"We will not let this disorder define who she is or what she is capable of. We will Keep Moving Forward. Always."

Then and there, it became our family motto.


The Foundation - And Hope

After coming to grips with what PWS meant for Brooke and for our family, we set out to find a way to Keep Moving Forward. We wanted to work towards creating a positive future instead of focusing on the negative present. And in our research we found the Foundation for Prader-Willi Research, or FPWR.

The leaders of this organization were incredible. FPWR was exactly what we were looking for, and their mission deeply resonated with us:

"The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research."

The research they organize is amazing. Genetics investigations, mouse models, drug trials, behavioral studies - they have gathered a top tier team of scientists and doctors and put together a research plan that clearly paves the way toward an independent future for Brooke.

But they need funding.

For years, the PWS community has been helping to organize walkathons called "One SMALL Step". Ordinary, everyday parents and caregivers put together events in their neighborhoods, recruit fundraisers, and try their best to raise enough money to fund the research proposed to FPWR.

Over the last 8 years, the One SMALL Step walks have raised enough money to start funding some of these projects. And the progress has been rapid and extraordinary. There are now drugs slated for clinical trial that could help control the hunger. And the PWS community is so hopeful for them.

But they still need funding.


Your Part - Our Request

My wife and I jumped into the One SMALL Step walks immediately. This year we will hold our fourth walkathon, and are very excited and grateful for the opportunity to help raise the funds. Anyone can register  to be a fundraiser for our events.

But only 20% of FPWR projects are funded each year.

So here's our request. We want to see how much life-saving research we can get funded via GoFundMe. The GoFundMe community is amazing, and we see life changing results come from donations all the time.

GoFundMe holds the promise of helping raise awareness and raising funds from the global community. FPWR holds the promise of helping our daughter someday lead an independent life.

Let's merge the two together.

Please donate if our story has moved you  - any amount helps. If you can spare a few dollars to help Brooke and thousands like her, we thank you so very much. But even more important is spreading the word.

The most powerful force in eliminating the challenges of Prader-Willi Syndrome is awareness. Please take just 30 seconds to share this, and let's see how much progress we can make with curing a rare disease. You can even become a fundraiser yourself . You'd be surprised just how far a few small donations can go.

Our daughter and everyone touched by PWS thank you.

Donations

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  • Anca Garcia 
    • $25 
    • 51 mos
  • Susann Carelli 
    • $15 
    • 57 mos
  • Susann Carelli 
    • $15 
    • 58 mos
  • Susann Carelli 
    • $15 
    • 59 mos
  • Susann Carelli 
    • $15 
    • 60 mos
See all

Organizer

Jack Jones 
Organizer
Brampton, ON
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