Dear Nicholas Sparks,
I bet you are probably wondering about this blog with your name on it. Or maybe not, as you're probably not reading strange blogs on-line. But this one is named for you so I'm crossing my fingers here.
This is what this blog is all about (and what's going on this blog in the About This Blog page):
Why?
This blog
was created in high hopes that one crazy mom, along with other crazy
parents and friends, can implore author Nicholas Sparks to write a book
about a family dealing with Congenital Diaphragmatic Hernia (CDH) to
raise awareness of this birth defect that affects 1600 babies each year
in the United States. CDH takes the lives of 800 of these children.
The cause is unknown and there is little awareness and virtually no
research funding. One book by Mr. Sparks that includes CDH can open
doors to save the lives of 1000's of these children.
Who?
I'm Dawn Williamson, mom to Shane. Shane was born with CDH in 1993 and lost his battle in 1999.
In 1995, I started a charity, CHERUBS,
that has helped over 5000 families in 60 countries. But after 20 years
and still no awareness and funding for these children, we need to up
our game to end this horrible condition. This blog is my crazy idea
but will be dependent on the input of many other CDH families.
Goal?
To
convince Mr. Sparks to meet with us and hear our request to write a
book about a family affected by CDH. Why would he be interested?
Because we are based in North Carolina, all of our stories are about a
great struggle and loss and lots of love and hope despite it all. And
because Mr. Sparks is a man who believes in helping children.
To be clear, we are only asking Mr. Sparks to meet with us. We are not here to harass anyone or tell Mr. Sparks what to write about in his own books (clearly, he doesn't need our help!).
This
blog is the only way we could think of for a little ole mom from North
Carolina to get a meeting with a famous author and share a dream on
behalf of the 1000's of families affected by CDH.
Isn't This A Bit Crazy?
Maybe.
Maybe this blog is one grieving mom's desperate attempt to remember
her son and make something good come from loss. Maybe it's the result
of 20 years of frustration in trying to stop the CDH monster and
screaming into the wind trying to get the world to listen. Maybe this
blog is a bit silly, too hopeful, too ambitious. But every dream starts
off a little bit silly, too hopeful and too ambitious.
What's the Plan?
To
write a letter to Mr. Sparks every single day of 2015. There will be
guest bloggers, posts about the charity, stories of some of these
families.
In the end, whether Mr. Sparks meets with us, writes a book, there's a
major motion picture... or not... we will raise CDH Awareness and maybe,
just maybe, a few more people will learn about these children.
More awareness = more research = more CDH survivors.
What do we have to lose by trying, right?
So, that's it! The worse that can happen is that you don't see this blog and/or don't respond. We at least have to try.
Sincerely,
Dawn Torrence Williamson
mom to Shane (1/28/93-9/11/99)
founder of CHERUBS
Wake Forest, NC
A crazy quest to raise awareness for the 1000's of children fighting Congenital Diaphragmatic Hernia.
As a fellow mom of a CDH child and a NC native this is a great idea, I am one of the lucky ones my Daughter Angel Crawford is now 23 so many of these children don't make it. The road for these families is long and hard and 50% of these families have to do the unthinkable bury their child. Mr Sparks your work is great your stories grip the heart and you do an amazing job please consider writing a story you have always been a man that values his children PLEASE talk with Dawn Williamson and learn about our CHERUBS as she stats this group was started in NC and supports families all over the world. It would be nice to see someone who has your talent to help spread awareness!
ReplyDeleteI live in SC. My granddaughter, Kaegan, was born on 10/28/14 & had her repair surgery on 11/03/14. Sadley, she passed away on 11/15/14. Kaegan is my first grandchild & my son and daughter in law's first child. I am 43 years old & had never heard of Congenital Diaphragmatic Hernia (CDH) until they found out during an ultrasound. Your work is amazing. You have a way of grasping the reader & making them feel as though they are the character in your books. We desperately need someone like you, with your talent & celebrity to be an advocate for CDH & help spread awareness. Currently, there is NO known cause of why it happens. It happens to boys & girls. There isn't enough awareness, except for the families that have been affected by CDH. There is no funding for research to try to determine the cause. It's a birth defect that has no reasoning of why it happens. If we could have more awareness maybe families won't have to spend weeks to months in the NICU of a hospital. Maybe babies won't have to be hooked up to every machine there is in a hospital fighting for their lives. Maybe babies won't loose their lives. Please consider speaking with Dawn Williamson. Research CDH & please pray about it.
ReplyDeleteHello I'm Stacey...one of ur biggest fans and a grandmother to a cdher. Currently my 1 yr old grandson Jacob is in SSM Cardinal Glennon. He spent 4.5 months n the nicu , and after a short 8 months at home pulmonary hypertension reered its ugly head again. I read ur books anyways but if u would b so kind as to help us get more awareness out there we would b forever greatful :) thank u for ur time
ReplyDeleteDear Mr. Sparks,
ReplyDeleteMy son Danny was born in August of 1993. Like Dawn, I struggled to find any information I could when I received the news that my son had a 5% chance of survival. There was very little out there. We were very fortunate to have a cutting edge physician who could think outside the box.
This New Years Day, I sit beside my 21 year old with not many more answers then what we started with.
Recent testing shows a weakening heart and he has 21% lung capacity left. Our cutting edge doc has no more answers as there is not enough research on kids that have grown to his age. There just are not that many that live that long. CDH is not a childhood disease. It is a birth defect and research could possibly eliminate this forever. 800+ babies would not have to die each year and 800+ families would not have to grieve.
Media today has a powerful impact. You could share your wonderful gift by lending a hand to a very worthy cause. We need a Champion! If you could help us get the word out and raise awareness, we might be able to find the cause.
I have read all of your books and you are my favorite author. Please consider what you might be able to do to help us.
May God Bless You!
I'm also a CDH mom. November 29 2010 my husband and I have birth to your first born when we were 18 years old. We found out at our 20 week ultrasound that she had CDH they told is that it was a slight case but could get worse. I was still in high school and my husband in college. As we got closer to the due date they told us that all but a sliver of her liver was in her chest cavity. Her lungs were severely under developed. When she was born at 38 weeks she had multiple surgeries within the first hour. (But I wasn't able to actually see her up close for 3 days after she was born. I had gone over 24 hours with my water broken and had gotten an infection and had to stay in hospital on antibiotics.) She had lung therapy every three times a day and was hooked up to multiple machines. We lost her on December 10 2010. After we lost her and found out 3 months later that I was pregnant there was nothing like living in fear that our daughter would have CDH just like her sister Lyla. Well she was born healthy as could be on December 9 2011.
ReplyDeletePlease Mr. Sparks it would be very helpful if you could raise awareness it could possible help some families from going through the grief of what we have been through. Please help us!! God Bless and have a Happy New Year
Mr. Sparks,
ReplyDeleteI want more than anything to have my son back. I know no one can ever make that happen, so why not bring awareness so other mom's don't have to say goodbye?
At 20 weeks, our son was diagnosed. We under went numerous amounts of tests. We found out we were a candidate for an experimental surgery. They do this on the worst cases, and the doctors said this was the worst case they had ever seen and ultimately gave him less than 5% chance to live. In September, I said goodbye to my family, my animals, my life, to relocate to San Francisco from Bakersfield, to under go the surgery and stay there for the remainder of my pregnancy. The surgery ended up not working, as our son coughed up the balloon placed into his trachea in utero. He was born 11/12/14, one month early. They whisked him away so fast, I barely saw his adorable face. Most babies cry when born, mine was silent. I had no idea if he was alive. They immediately started working on him in another room and let me know he was in fact, alive. I did not get to see my son for hours. He was hooked to more machines than anyone should ever be. He was put on life support (ECMO). He under went his repair surgery. He couldn't stop bleeding. Under went a second surgery to instal a Silos. It did not work. They replaced 3x the amount of blood his body needs. We held our son while he took his last breath. Mr. Sparks, this isn't right. This isn't what being a mommy is supposed to feel like.
My son is Easton Colt Sanford. That is HIS story. 11/12/14 - 11/23/14. Please help us raise awareness. I don't want to continue to see these stories on my Facebook feed and on the CHERUBS website. Please help us save these babies. God bless you.
Good morning Mr.Sparks
ReplyDeleteMy name is Justine Morgan I'm from NYC and MY Son Taylor Greene was born with CDH...I knew there was something wrong although the doctors and nurses refused to believe me...When he was first brought to me after birth I realized his breathing was off and I was told it was normal because all babies are born with mucus in their lungs...At his first doctors visit I told his pediatrician of my concerns and was told the same thing... Miss.Morgan all babies are born with fluid in their lungs...At barbecues my son would scream bloody murder from the charcoal smoke. .Well the second doctors visit was 1 1/2 months when the pediatrician heard a heart murmur and Taylor was sent to pediatric cardiologist whom discovered his LCDH... after two major surgeries to repair his Hernia one at 3 months and the other at 8 months, He now struggles with Esophageal Dismobility. ..Although we have learned to control it and he does not eat certain foods it is a daily struggle trying not to hold on to negative thoughts of the what if's....Taylor is now 3 years old and booming lol. .If there were more awareness of CDH possibly Taylor and every cherub that comes after him would have immediate help...We are mothers who have had many sleepless nights in hospitals and many at home....It would be a pleasure for our hearts to be at ease knowing that this book could help another human being. ..