ROCK The Fight Against CHD

THANK YOU!!!!

“ROCK The Fight Against CHD IV” will be remembered for the phrase, “sometimes you get more with less.”  In spite of the fact that we had a smaller crowd than years passed, we still raised over $11,000 for CHD research and support.  This is testament to the human spirit of giving and to the fact that my wife Jayna and I are truly blessed to know so many amazing   people!  We thank all of you from the bottom of our hearts for your collective generosity.

Once again we painted the Venus DeMilo Restaurant in Swansea, MA red in recognition of our little heart heroes.  Thanks to the people who have donated or volunteered as part of our fundraiser in each of the four years.  Thank you to our corporate sponsors, silent auction donors, and everyone who gave of themselves and their talents to make this event so special.  We also need to thank our beneficiaries, The American Heart Association, Mended Little Hearts, and Olivia’s Heart Fund for their support throughout the planning of our event.

We had some special performances and moments throughout the evening.  Thanks to The Pink Lady Group, Michaela Gagne-Hetzler, Ed Violette, Delaney Wilson, and of course, Grace Morrison and the RSO for entertaining us.  Thanks to Julie and Pete Ostiguy, winners of this year’s CHD Champion Award, for their inspiration and their support of countless CHD families.  It was also a pleasure meeting this year’s “Little Heart Hero”, Keith Mello, who    captured our hearts as a CHD survivor and upcoming golfer.  We will all remember the cupcakes that were so generously baked and donated by Linda Santos of J. Joy’s Sugar Shack.  We also had our first Lemonade Stand run by the kids in the room, and who can forget the   enormous table covered with wine for our Cork Pull thanks to Pete Ostiguy.

Each year the volunteers are simply wonderful with the team from Kohl’s Cares coming for the second straight year.  One volunteer in particular deserves a shout out:  THANKS to our friend Gail Senuick who is consistently giving of herself to our event as well as others in our community.  Once again, the décor, the sound & lighting, the video work , the food, and the overall atmosphere gave us the feeling that we were making a difference in the lives of so many CHD children and families.  We could not do it without YOU!

Thanks again to EVERYONE who made “ROCK the Fight Against CHD IV” a success.  The Wilson family thanks you for    giving, for attending, and for caring!

Sincerely,

Donnie Wilson

Co-Coordinator (Jacob’s Fund), National Awareness Committee (Mended Little Hearts)

 

ROCK The Fight Against CHD FOUR!

Friday, August 2, 2013

(6pm-10pm)

Venus DeMilo Restaurant

75 G.A.R. Hwy, Swansea, MA

Reservations available online or at the door:

Adults:  $25  / Under 18:  $10  / (CHD Survivors – FREE!)

Click the following link to make your reservation online:

http://honor.americanheart.org/site/TR/FunRaiser/NAT-Funraiser/1042133701?px=3679610&pg=personal&fr_id=1150

(June 1, 2013) ROCK THE FIGHT AGAINST CHD FOUR – “A concert and fundraising event promoting awareness for congenital heart defects.”

“ROCK The Fight Against CHD” has raised over $40,000 for CHD awareness and research while drawing big crowds of music fans each year.  On Friday, August 2nd this exciting concert and fundraising event returns to the Venus DeMilo in Swansea, MA for a fourth year.  Event coordinator and local musician, Donnie Wilson will emcee the event, sharing some songs and a few stories from his family’s journey with CHD. Wilson was inspired to write and record his album, Sedated Echo, released in 2010, when the amazing doctors and nurses at Women and Infants Hospital and Boston Children’s Hospital saved the life of his son, Jacob, who was born in May 2009 with CHD (a Congenital Heart Defect).  Our CHD heroes became the inspiration behind Wilson’s music.  His single, “Super Hero Fantasy”, has been used for CHD awareness campaigns around the country.  Wilson also Co-Chairs the National Awareness Committee for Mended Little Hearts.

Donnie Wilson calls this year’s headlining performer, Grace Morrison and the RSO, a truly amazing Americana indie-folk quintet, and one of the best local groups he’s heard in years!  The Boston-based band consists of Grace Morrison (lead vocals, acoustic guitar, accordion), followed by Benjamin Moniz (guitar, mandolin, banjo, vocals), Max Judelson (vocals, bass), Marta Rymer (violin, vocals), and Nate Tucker (cajón, percussion).  The band formed in 2010, emerging out of the fertile New England music scene.  All five musicians are classically trained.  Their debut self-titled CD was released in the fall of 2012 and is now available on iTunes and CD Baby. Grace and the RSO use folk and bluegrass instrumentation to tell the stories of early Ireland and England, songs of heroes and villains, kings and queens and the legends that follow. Their vocal harmonies organically blend together with a down to earth and refreshing sound, as evident in the lead single ‘Stuck on You’. Much of Grace’s lyrical content is taken straight from the pages of history. She playfully tells these stories during their live performances and the fans enjoy it!

Bring the kids and enjoy some great music, a lot of laughs, our wonderful silent auction, plenty of food and many special moments with our CHD heroes.  Together, we can beat America’s #1 birth defect, CHD!!

Net proceeds from ticket reservations will be donated to the American Heart Association for Pediatric Cardiovascular Research.  Net proceeds from the silent auction will be donated to the National CHD Awareness Fund for Mended Little Hearts.  Proceeds from our cork-pull will be donated to Olivia’s Heart Fund.

 

Fall 2012

THANK YOU to all who made “ROCK The Fight Against CHD III” the best year yet!

What a night it was on August 3, 2012 at the Venus DeMilo in Swansea, MA for CHD!  Thanks to the efforts of so many wonderful people like YOU, we finally broke the $15,000 mark, surpassing previous years by more than $5,000/year.  We’ve learned a lot with our first two fundraisers, and this year seemed to work on all levels.  We took the essence of the Mended Little Hearts “I See Red” campaign and turned the room into a visual tribute to CHD awareness.  Heidi Caron Guay did an amazing  job with the table displays, and Jen Violette knocked it out of the park with the stage back drop.  Once again our corporate donors stepped up in a big way, as well as so many other professionals who gave of their talents and time to participate.  The silent auction graduated to it’s own room this year, and to all who donated to that as well as the cork pull, the picture wall, and sports memorabilia, it could not have been better.  The concert room seemed to have a buzz the entire evening.  Michaela kicked it off in style, Lizz cracked us all up once again, Andrea blew us all away, and Back-2-Back brought back a lot of memories with their reunion.  For the first time we were streaming live on LifeofDad.com, and Video Excellence pulled through with flying colors.  Jacob’s Fund was thrilled to worked with Boston Children’s Hospital and Dr. John E. Mayer for CHD research as well as the Gabrielle Dinsmore Heart & Hope Fund and their camp for CHD kids.    Thanks to Kohl’s Cares and all of our  dedicated volunteers who worked the event.  Thanks to Mixed Media, 94WHJY, the Somerset Spectator and all who advertised and shared our cause.  “ROCK The Fight Against CHD” would never happen without the love and dedication of my wife Jayna and my folks, Don and Gloria Wilson.  This has become our family event where even our daughters inspire their friends to make bracelets and bead pets that they sell for our charity.  CHD has touched us and so many other families in such a powerful way, and we consider ourselves very blessed to be able to make a difference with our annual event..  Can’t wait for 2013!

ROCK The Fight Against CHD III “Unplugged”

Friday, August 3, 2012 (Doors Open at 5:30pm)

Venus DeMilo Restaurant, Swansea, MA

MAKE YOUR RESERVATION BY CLICKING THE LINK BELOW

http://howtohelp.childrenshospital.org/events/pfp/?ID=WD0032&Name=rockthefightagainstchd

Adults – $20  ($25 night of show)

Under 18 – $10

All CHD Survivors are FREE

FOR IMMEDIATE RELEASE (June 1, 2012)  In 2010 and 2011, “ROCK The Fight Against CHD” has raised almost $25,000 for CHD awareness and research while drawing over 600 people.  On Friday, August 3rd, this exciting concert and fundraising event returns to the Venus DeMilo in Swansea, MA for a third year.  Event coordinator and local musician, Donnie Wilson, is excited to reunite with his uncle, Ed Violette as the acoustic duo, Back-2-Back that had a huge following in the S.E. Mass area throughout the 90’s.  Wilson was inspired to write and record his album, Sedated Echo, released in 2010, when his son Jacob was born with CHD (a congenital heart defect) in May 2009.  Wilson was always recognized for his soaring vocals, his gritty guitar work, and his charisma in front of a crowd.  Now, his return to music is defined by his passion for CHD advocacy.  The amazing doctors and nurses at Women and Infants and Boston Children’s Hospital who saved the life of Jacob and so many other CHD patients have served as the inspiration for the single, “Super Hero Fantasy”, which is now being used in several national efforts for CHD awareness.  Wilson also serves on the National Awareness Committee for Mended Little Hearts.

Ed and Don performed to music fans all over New Englandfor many years.  Matthew Bowman from New England Performer Magazine back in the April 1993 issue said, “The vocals and guitar work of Wilson and Violette were all razor sharp, reminding me of the type of stuff Jon Bon Jovi and Richie Sambora do all the time.”  If you walked into a local S.E. Mass bar in the 90’s when they were playing, it was full.  Now, in 2012, they perform their first full length concert event, with Ed’s son, Matt joining in the second set with the same amazing guitar chops as his dad!

We welcome back our hysterical friend, comedienne and Somerset native, Lizz Furtado, back to host the event.  Opening for Ed and Don is 15 year old, singer songwriter, Andrea LeClaire who’s debut video, “Next Time” is approaching 30,000 views on YouTube as of this release.  This year’s show will also be streaming live online at www.LIFEofDAD.com, a website launched by comedian and fellow CHD dad, Tom Riles, who currently warms up the studio audience for the Ellen DeGeneres Show.  Bring the kids and enjoy some great music, a lot of laughs, our great silent auction, plenty of food, and many special moments with our CHD heroes.

Net proceeds from ticket reservations will be donated to Boston Children’s’ Hospital Trust.  Net proceeds from the silent auction and corporate donations will be donated to Gabrielle’s Heart Camp for kids with CHD.  Lastly, a link will be posted on LifeofDad.com for the people watching live online to donate to the National CHD Awareness Fund for Mended Little Hearts.

Back 2 Back together again for ROCK The Fight Against CHD III

SAVE THE DATE, Friday, August 3rd, 2012

‘ROCK The Fight Against CHD III’ – Unplugged

The reunion of Donnie Wilson and his uncle, Ed Violette (Back 2 Back) is something that music fans in South Eastern Massachusetts have been waiting for since the late 90’s.
Details coming soon…

Jacob01

THANK YOU to everyone who made “ROCK The Fight Against CHD II” a huge success!!

Click this link for details: http://howtohelp.childrenshospital.org/events/pfp/?ID=WD0032&name=rockthefightagainstchd

“Super Hero Fantasy” – Now Available on MP3 and CD.

The birth of our son Jacob, and the challenges we’ve faced with his Congenital Heart Defect have truly inspired us as a family.  During our stay at Boston Children’s Hospital, I witnessed the most amazing doctors and nurses who cared for our son and comforted us as a family.  I also discovered how 1 in every 125 children is born with a heart defect. You never know until it happens to you!  It occurred to me how everyone who surrounded Jake, from family, friends, and neighbors to everyone involved with his medical care needed to step up and almost become like superheroes to handle this most delicate challenge.

That notion became a new song that I wrote while sleeping next to Jacob in the hospital called “Super Hero Fantasy”, and the will to help future children and families became a mission to raise money for this cause.

Please consider donating to “Jacob’s Fund”, where 100% of the profits will go to the Children’s Hospital Trust Boston and research for CHD.   You can donate as little or as much as you like.  Once you donate, I will recognize your kind generosity by emailing you the MP3 of “Super Hero Fantasy” for you to enjoy and share with others who need inspiration and comfort. Our hope is that, “Super Hero Fantasy” will inspire you in your life, and rest assured that your contribution will some day create cures for children just like Jacob.

A special THANK YOU to my friends Alex Krepkikh and Roland Audette for their fine musicianship on this tune.   Roland did a fantastic job as always playing drums, and Alex was outstanding as he produced, mixed, mastered, and also performed on this project.

Super Hero Fantasy (SAMPLE)

Audio clip: Adobe Flash Player (version 9 or above) is required to play this audio clip. Download the latest version here. You also need to have JavaScript enabled in your browser.

CLICK HERE TO DONATE!

And now, Jacob’s Story…

(In the words of my wife Jayna, prior to Jacob’s birth)

March 20, 2009 was a typical day until, at 32 weeks, I started bleeding and was rushed to the hospital via ambulance.

It stopped pretty quickly and I had no other major issues, but in trying to figure out what had happened, they discovered Jacob had a critical heart defect during an ultrasound. After many tests, the diagnosis was critical aortic stenosis withother complications. His left ventricle was dilated with a thin wall and a lot of scar tissue, in addition, his mitral valve was not functioning and his atrial septum was very small. In short, only half of his heart was working, the right side which does all the work in utero. Once he was born, his left side was not going to be able to take over. Jacob’s heart looked very similar to Hypoplastic Left Heart Syndrome and would be treated as such. The most popular treatment would be three staged open heart surgeries. One at birth, one at 4-6 months, and one at 2-3 years old. Needless to say, we were devastated. The only bright light was that if I had not had the issue, this would not have been caught before his birth and his chances would have been much more slim. Jacob is a strong boy and it is going to be a long and difficult journey, but we will all be better people for having him in our lives.

quote_jayna

Jacob was born on May 11th at 4pm, and he weighed 8 lbs. Within minutes of being born, Jacob was rushed to the NICU to be stabilized for his trip across the bridge to Boston Children’s Hospital.  He would spend several days in the CICU (Cardiac Intensive Care Unit) where some of the most amazing doctors and nurses in the world reside.  After their evaluation, they transported Jake down to the catheterization lab where they performed a balloon dilation of his aortic valve.  We were hoping that if they inflated a balloon and opened the damaged valve that his left ventricle would start to pump.  If not, we were looking at several open heart surgeries to make up for the lost ventricle.

childrenshospital

Miracles do happen, and prayers do get answered as his left ventricle started pumping.  It was not nearly good enough to sustain his blood flow, but it was a step in the right direction.  From there, they monitored him closely as he recovered.   Over the next couple of weeks, his ventricle slowly improved and his Cardiologist, Dr. Gerald Marx, now officially a hero to our entire family, basically said, “comb his hair and take him home.”  Clinically, Jacob looked great, and was performing all of the ‘normal’ baby functions.  We knew that his aortic valve had issues, but we’d cross that bridge when we got there.

doctormarx

After a couple of months, Jacob was growing and doing very well, and then on July 23rd, we crossed that bridge.  After a routine echo-cardiogram that we expected to check out fine, they found a problem.  The pressure gradient across his aortic valve was up to a level of 90.  They like to see numbers in the 20’s.  The good news was that his left ventricle was functioning almost normal, but it was pushing more blood flow through a valve with a small opening.  So, that afternoon, to our surprise, they admitted Jake for another procedure.

The next step was balloon dilation just like he had the evening he was born.  After the surgery, they confirmed that his gradient was down to 45.  They would have liked to see numbers in the 20’s, but we were happy cutting the problem in half.  The next morning, they performed another echo-gram before sending us home which was routine procedure.  We were basically getting comfortable with the idea of needing more these dilations over time to keep working the valve.  A couple of days in the hospital and then home… not bad.  Then the next surprise: the gradient was right back up to 85 the next morning, so the procedure did not work.

At this point we are still monitoring his valve with echo-grams, and the last gradient was down as low at 75, but it’s still a dangerous level over time.  If nothing changes with this damaged valve we are looking at a couple of options.  One: performing a valve repair.  Two:  open heart surgery replacing his aortic valve with his own pulmonary valve.  Obviously, we prefer not to have to go that route, but we believe in his doctor and the cardiac team in Boston: they are truly the best.   We know the road with Jacob may be bumpy from time to time, but his presence in our lives and the joy he brings to our family will prevail.  Our daughters, Delaney and Jocelyn, are just in love with him, and they are constantly pulling for his little heart to heal.

family_jacob

Being a song writer, I was moved by the entire experience with Jacob like I have never been moved before.  I kept thinking about how everyone in the mix, from parents and friends to the doctors and nurses at Boston Children’s Hospital need to become like superheroes in many regards.   As I slept next to Jacob during his hospital stay, I started writing and a song emerged called “Superhero Fantasy.”  100% of the profits from all downloads and additional donations will go to the Boston Children’s Trust and research for CHD (Congenital Heart Defects).   1 in 125 children are born with CHD, and not nearly enough money is funneled towards that research.  I will continue to share Jacob’s path with everyone in my network, and I’m hopeful you will help me spread the word to raise money for this important cause.  God Bless little Jacob!

2/23/2010

Jacob is now going on 10 months old and doing VERY well.   His next appointment will be when he turns one year old in May when they will conduct another sedated echo.  We know that we are far from being out of the woods, but so far, Jacob’s aortic valve is holding up.   The next big test will be when he starts walking… which will be happening very soon.  Stay tuned!

“Super Hero Fantasy”                                                    Donnie Wilson Music – 2009

superherofantasy

“Super Hero Fantasy”                                                    Donnie Wilson Music – 2009

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