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Important Letter on CDH Research from the President of CDHi.

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Important Letter on CDH Research from the President of CDHi.

Dear CDH Families,

This is going to be a long one….

A couple of weeks ago I posted this question on Facebook; “Who is responsible for CDH research?”

It’s taken me this long to respond because I honestly was floored with the answers and didn’t want to respond emotionally. I was floored… flabbergasted, shocked, disappointed, sad…. and scared. Very scared.

I think only 2 people responded with “Us”.

2.

Everyone else responded with “researchers”, “doctors”, “government”. A few with “charities”.

Out of that list, how many of the people in those positions actually know / knew your child? Loved them? Send them a birthday card or visit their grave?

I’m guessing just those in charities. Because I’ve yet to run into a doctor, researcher or government official at the cemetery. They aren’t in the birthday party photos you all post on social media either.

So I’ve had a lot of time to think the past 2 weeks as I’ve been off of work and in and out of the hospital and doctors offices myself…. and the only conclusion that I could come up with is….. we (myself and CDHi)….. have completely failed in educating the CDH community about research and how it works.

So it’s time for some Medical Research 101:

First Lesson: No one will ever care about your children as much as you do.

They will not donate their careers to CDH research, forgoing salaries, risk feeding their own families or paying their own bills. Doubt that? Ask what their salary is.

Oh your kid is cute and your doctor may genuinely care… but if you can’t pay your medical bills, you think they will continue caring?

No.

Not because they are cruel or selfish or anything awful but because research is a business.

A for profit business.

Even in non-profit hospitals, the work is for profit. And the majority of money paid for “research” is actually for salaries. And that’s ok! Because people do the research! But those people need to earn a living.

This means….. that researcher, surgeon, nurse, lab tech, secretary, custodian and every other employee at that research facility gets paid. To care about whatever research they are getting paid to research.

Now, there are researchers who know our kids and do personally care to go to the extra mile…. but this is their job. 99% don’t have personal connections to CDH.

And next year they may care about another defect or disease they are getting paid to care about.

I’m not bashing researchers. I’m stating facts. I am friends with many researchers and adore them but I understand how the system works and that this is their job.

Will you work for free for CDH and sacrifice your career and family to stop it? No? Yeah, I’m probably the only lunatic who’s done that for years on end. So let’s not fault anyone wise who won’t, including researchers.

Lesson Two: The Squeaky Wheel Gets The Grease

So now that we’ve established that researchers must get paid, whose responsibility is it to pay them?

“Oh oh oh I know! The government!”

Wrong.

The government runs on votes and voices and helping the most citizens as they can.

How many times have you written your Congressman? Senator? Joined us in Washington?

I can count in single digits the number of CDH parents who have done this so why would the government care to fund research if the citizens aren’t banding together to ask for it?

NIH, NHS and other government research funders fund what citizens want funded. Period. The are run by people who answer to people who are in office by votes.

“The charities are responsible for that?”

You do know the charities are made up of other moms, dads, grandparents and survivors?

Soooooo…. where’s your letter?

I work hard in DC with other parents and grandparents knocking on doors but there aren’t enough of us to get the NIH to send money to our kids. The wheel isn’t squeaky enough! Despite my joining NIH committees and other organizations. Despite begging all of you to participate.

We. Need. Your. Voice. Too.

Lesson Three: There Is No Money Tree

No grants for CDH. No government funding for charities for research. No magic foundation book. No magic beans.

It’s all hard work.

CDHi took 24 years to raise $2 million.

And we worked hard for every cent. You worked hard!

How many babies have been lost in those 24 years? Too many.

Ask any of the other CDH charities how hard it is to raise money. None of them have reached a million yet if you add up their income by tax forms. Even those over a decade old. Because it’s hard!!!

And only 2% of CDH families give back. Because CDH is hard.

“How much does research cost?”

Do you want real research or a symbolic gesture of hope? Millions for real research.

Millions.

Lesson Four: WE ARE RESPONSIBLE FOR CDH RESEARCH

We are responsible for CDH Research.

We. As in me. And you. Yes, you. And every other CDH family.

Because no one else is going to.

And our children are dying.

And if we don’t love them enough to fight for research, no one else will.

WE are responsible for funding research.

Just like every other disease and defect before us has been solved and cured because patient families funded research and pushed the government to fund too.

Every. Single. One.

Google the history of the Cystic Fibrosis Foundation. Go ahead. Same occurrence rate as CDH. See what those parents did?

So why aren’t our kids worth that effort too?

They are. But CDH families haven’t grasped that WE are the ones to save our own children.

If we want research, WE must fund it.

WE must participate in studies.

52,560 babies every year are born with Congenital Diaphragmatic Hernia. 144 each day worldwide. Only 50% of those born in high-income countries will survive Congenital Diaphragmatic Hernia (CDH). Only 1% in low-income countries. This is our responsibility to stop.

Have you filled out the CDH Registry Form yet? Why not? It’s free. Have you not seen the videos of surgeons and researchers asking you to fill it out? cdhresearch.org Go do it! Our children’s lives literally depend on it!!!

Signed up for the genetic studies? Do it if you can, survivors!!!!

Now… that funding…. go look at your CDH survivor’s face or your angel’s photo….. how much would you pay to save them from Congenital Diaphragmatic Hernia?

Start fundraising that amount.

And work with charities! Please for the love of all kids with CDH, put ALL the children first and work with existing CDH charities! Splintering and egos to do our own things has thrown CDH Research backwards by decades!

Would you expect someone else to put shoes on your child?

Pay for their education?

Feed them?

So why do you expect someone else to save them?

That’s on us.

Our kids don’t have research because we haven’t funded it.

And by “we”, I mean all of us families because charities are a collection of families working together and supporting new families.

That’s us.

We raise money = we pay researchers for research = we find the cause of CDH and stop it.

We don’t raise money = our kids don’t get help.

That’s how medical research works.

The screen capture shows what I’ve personally raised for CDH via FB fundraisers alone. That doesn’t include my own donations, offline fundraisers, events I’ve managed, etc. I’m very proud to have led a charity that has raised $2 million.

I’m just a CDH mom. And my child isn’t even here. I’m fighting for your kids. Won’t you fight too?

You can raise money too. Let’s do it together and pool it and push for real research for your kids.

Because if you do nothing, nothing will happen.

“Someone else” won’t do it.

And anger that “CDH has cost us enough already” doesn’t matter.

Sticking our heads in the sand and “moving on” will cost more children their lives.

Being “too busy” to save them is just awful.

Raising awareness on social media is great but does not fund 1 cent of research to save these kids.

No excuses. NO Excuses! Look at these little faces and help them! No excuses!!! They deserve help!

To be blunt and shocking (but truthful)…. the blood of these children is on our hands because they are counting on us to save them!

We cannot go about our lives as if this problem doesn’t exist – just like the world goes on like these children don’t exist!

Don’t turn away! Don’t pass the buck!

Please help us to help you and your children.

Edited: Most people won’t read posts with donation buttons so removing that and posting photo in comments to try to get more people to read this and learn.

Hopefully this post will jolt our community into action because these children sure do deserve that. Because your silence speaks loudly if we don’t stand up.

Please share this post or forward this e-mail.

Please donate.

Please start a fundraiser. Email us at fundraising@cdhi.org or via our FB pages at CDH International and CDH International – Cherubs Congenital Diaphragmatic Hernia Support

Please do anything you can to help stop Congenital Diaphragmatic Hernia. Anything.

Sincerely,

Dawn Ireland, President of CDH International

(2) Comments

  1. Susana María Rosende says:

    In Memory of my son
    Sean Matthew Lutz
    April 29-30, 1988

  2. Julie Gannon says:

    In memory of my granddaughter, Isabella Faith Klinker, March 27 – July 8, 2014. Isabella passed away after struggling for her life every second of her 103 days in ICU. She had more tubes and wires coming out of her little body than I’ve seen in some open heart surgery patients (RN Surgical Intensive Care Unit). Across the hall was another CDH baby. He was there for less than a week then went home with his parents. Why did Isabella have to suffer throughout her short life of ~8,899,200 seconds, all in the dark? She was one of the unlucky CDH babies. Research may have been able to save her life; a cure definitely would have.

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