Tuesday, January 13, 2015

January 13 - Dear Nicholas Sparks

Dear Mr. Sparks,

Today I would like to introduce you to some really incredible people and tell you how our charity is run.

We worked from a guestroom in my home for the first 15 years.  Well, it was more like my guestroom, the closets, the attic, under my kids' beds to store all the newsletters, files, care package items, etc.  I worked all-nighters sometimes to finish up projects and for 10 of those years, I also ran a web design company.

So I volunteered from home and so did about 20 other CDH parents and grandparents.  We had begun established Representatives for states and countries early on and several gained charity status in their countries with our materials, members and full support.   We all worked evenings and weekends, chatting on-line and plotting more ways to help families.   There were highs and lows, years of much activity, years of little activity but we still grew each year.  

Then I got remarried after being single for 8 years.   All night work marathons are fine as a single person, not so much when you're married with 2 new step-kids.   The new husband say "you have to pick one job and you have to get an office".   I chose CHERUBS, much to his chagrin as there was no pay, but I couldn't give up my last connection to my son and I couldn't let families lose the only support they had.

So our Board of Directors voted to start me on a small salary and we moved into an office.  I had one year to prove my worth.   Then CHERUBS exploded.  We doubled our income that year, then again the next and again the next.  The new office allowed me to clock in and out of work somewhat.   For 8 hours a day, I began to focus on the charity.

Then even more wonderful things began to happen... we found local office volunteers!   We got our first intern and families would come and volunteer when they had time.  Soon, we outgrew our office and found another downtown here in Wake Forest and started networking with local businesses.  Our volunteers grew in number.  And we grew and grew.  

We restructured our charity a few years ago from a Board of other parents and grandparents to 3 Boards; Executive, Parent and Medical.  We should have done that a decade ago!    Our Executive Board is made up of local businesspeople, including our Vice-President, Ashley Barry, who is also a CDH mom.  Our Parent Board is run by Tracy Meats and Josh Hensley, who head all family services, volunteers and oversee committees along with the rest of our CPAB (CHERUBS Parent Advisory Board); Felecia Woodruff, Shelly Moore, Karla Holt and Karol Napers.   Our Medical Advisory Board has been comprised of best CDH experts in the world.  We also have Representatives and Committee Members, local help and fundraisers.  We are blessed that so many amazing people want to help our children and our charity!

(click photo to enlarge)

And they are a good looking group of people too!  :)  You can read all their bios on our web site.

But what you won't read on their biographies is how dedicated they are.

Tracy Meats had a heart attack not long ago and she still leads our volunteers and helps new members.   Our charity could not function without her.

Our Vice-President, Ashley Barry, is a research scientist, wife, mom of 2 very busy little girls (including CDH survivor, Jessica) and she still keeps me in line and on focus.

Karla Holt is a school teacher, wife and has two kids with medical issues and finds time to help families who want to hold fundraisers.  She is also State Representative for North Carolina.

I told you about Felecia Woodruff in yesterday's letter.   I don't know how we raised awareness without her now.

Shelly Moore has faced CDH twice in her family and multiple members of her family also face another unknown condition, Marfan Syndrome.  She works tirelessly for both causes.

Karol Napers and her family have held multiple fundraisers, ran marathons and taken some of our most memorable Save the Cherubs photos in honor of their survivor, Tate.  Tate's big sister, Lexie, even wrote a kid's book that we're working on publishing.

Clair Maher works full time, grieves 1 child and takes care of 3 other children, including cherub Charlie, who suffered a stroke on top of CDH.  Through all this, Clair, and our other UK volunteers, Melanie Parsons, Zoe Burchell and Cara Stevenson organized the very first CDH Conference for families in Europe this past summer.  Many had never met another CDH family before this conference.  These ladies made that happen.  

Josh Hensley and his wife, Melanie, lost their first 2 daughters to CDH.  This would crumble most people but Josh travels around the world with us to help raise awareness, leads our volunteers along with Tracy and is State Representative for Utah.  And he never focuses on himself and his grief, he is more comfortable focusing on helping other parents.

Josh isn't the only volunteer who has had 2 children born with CDH.  DeAnn McGilberry has both a survivor, Celie, and lost a cherub, Claude.  She runs a business, takes care of Celie and her brother, who also has a medical condition, and volunteers as Alabama Representative.  Did I mention that Celie is now a famous child model and DeAnn travels often to take her to shoots?

Jill Gibson is a single mom to cherub Ben and works alongside Patricia Houle, grandmother to cherub Maddie, to support our Nevada families and raising awareness on huge levels.  Thanks to them, many families are no longer alone.

Nicki Young is our State Representative in Arizona.  She has 10 kids including cherub Anderson and several of her family members have medical conditions.  She spends more time in the hospital than some of the medical staff probably and still finds time to help others and never complains.

Melissa Larrison is mom to 3 beautiful daughters including Hanna, who was lost to CDH.  She has held many positions at our charity, including Virginia State Representative, and has walked the halls of Capitol Hill with us, knocking on doors for help for our kids and danced with us at our Masquerading Angels Ball, which she only helps with. 

Joe Dowdy, Curtis Van Horne, Mark Fulk, Jason Miller and Sara Robison have no personal connection to CDH at all.  They came on board because these babies have touched their hearts and they want to make a difference.

There are so many, many other volunteers that aren't mentioned here and do not have a photo posted in this letter but they are so appreciated and valued as well.  Every single one of them.   These are moms, dads, grandparents, older CDH survivors who don't just talk the talk of stopping CDH and helping others... but they walk the walk.  They saw a need that needs to be met and they stepped up and volunteered to help.  They are all my heroes.

Then there are also the incredible members of our Medical Advisory Board.  Dr. Kays travels around the world with us and is family to many of our members now.  Dr. McPeters is a CDH survivor himself who went into pediatric surgery as a nurse before recently becoming a doctor.   Dr. Donahoe and Dr. Chung are 2 of our biggest supporters and the ladies that will lead us into finding the cause and prevention of CDH.

How can I thank each one of these amazing people for all that they do for our children?  For the time they spend away from their families to help others?  For the out of pocket costs they incur traveling and buying supplies to help other families when many are struggling to take care of their own.   They have gone around the world, jumped 4 stories to raise awareness, jumped from planes to raise money, led parades, sat by hospital bedsides, attended funerals, attended birthday parties.  They throw wings on their kids to take photos as much as possible to raise awareness and there is no limit to what some will do to help our kids.  They took a charity that started with 2 members and a typewriter on a kitchen table to an international organization helping over 5000 families, raising awareness and funding research.  They did this.   They are dedicated.  We are a team.  We are a family.

And as a family, we ask you, Mr. Sparks, to do what we cannot do for our children and that is to give them a voice.

Dawn Torrence Williamson
Very proud CDH charity leader


1 comment:

  1. Mr Sparks, dearest Nicholaswill you help?! You can make such a major difference!