An Exciting Four Months

4th Annual Giving From the Heart Gala A Success

 

On Saturday, September 27^th Matthew’s Hearts of Hope hosted it’s  4^th Annual “Giving from The Heart” Gala at Anthony’s Lake Club In Danbury.  In total, almost $40,000 was raised to benefit babies and toddlers suffering with Congenital Heart Defects.  The evening kicked off with an exciting silent auction and Celtic Cross Pipes and Drums playing a heartfelt "Amazing Grace," a crowd favorite.  

Sherman’s own celebrity Joe Moravsky  aka "American Ninja Warrior Finalist" emceed the evening with his own brand of high energy.

Guest speaker Erica Venezia shared the emotional story of her daughter Faith who passed away on December 22^nd 2010 from complications of CHD.  

This moving talk was followed by Dr. Chelliah who spoke about the real impact that Matthew’s Hearts of Hope has had on a CHD Research Project that she worked on with Dr. Hannah Fraint. The project involved the creation of a 3 D Heart which helps surgeons to better plan complex surgeries on CHD babies and toddlers. One such baby, born on July 14,^th was spared a second open heart surgery as well as extended time on a bypass machine because of this funded project.  His mother sent a personal thank you message to everyone in attendance at the Gala. 

Matthew’s Hearts of Hope continues to have a BIG impact in the CHD World. We would like to thank all of our sponsors, donors and friends of Matthew’s Hearts of Hope as well as everyone who attended our wonderful evening of celebration. There are many worthy causes to support and we are grateful that so many have continued to open their hearts to support the ongoing efforts of Matthew's Hearts of Hope.

MHOH Fundraising Committee

MHOH Board of Directors

We will be posting  more pictures from the gala on our photo gallery shortly!  Thank you again for making this year's gala such a success.




September, 2014
Rhode Island  Implements Pulse Ox Testing Through Department of Health
Not only are we getting excited about our gala next week.  We have some more exciting news we would like to share with you!
Matthew's Hearts of Hope was just notified that the Rhode Island Department of Health finalized a regulation on August 12 that adds CCHD to the mandatory newborn screening panel.  The implementation/compliance date is July 1, 2015 – but all birthing hospitals have already adopted pulse ox as the standard of care.  
Those involved did not need to go the legislative route as we did in Connecticut and New York because the Department of Health already had the statutory authority to expand the newborn screening panel.   Great job Rhode Island!

August, 2014
Results of Matthew's Testing 
As many of you may already know, Matthew completed his cardiac catheritization on July 30th. Unfortunately, he has a narrowing at the Fontan site which will require another open heart surgery. Although we are nervous to have Matthew go through his 4th open heart surgery, we are very hopeful that all will go well. The surgery is scheduled for November but we will keep you updated as we get more information and thank you for your prayers. Each and every email, text, note, and Facebook "Like" has helped us feel your love and support. Thank you.

A Testament To MHOH 
As we were waiting for Matthew's testing to be completed, we had the opportunity to meet an amazing little baby who was directly impacted by what MHOH has accomplished with your support. Baby S was diagnosed with a complicated congenital heart defect. One of the Fellows that received a MHOH grant, Dr. Hannah Fraint, was able to create a 3D heart that assisted the surgeon in preparing for and completing the complicated surgery on Baby S. The result: the surgeon had the confidence to perform this complicated surgery because of this 3D heart model and they were able to correct the defect and save Baby S from going through a 2nd surgery. It does not get better than that folks. Your support helped to make this a reality. Thank you!!!!!!  

The Gift 
As I arrived home the other day, there was a package in front of my garage. I brought it inside and opened it. It was a gift for Matthew and it was sent to us by the Baby S's family with a note of thanks. In the note, they shared the following. "We don't know where to start - we want to express our thanks from the bottom of our hearts. You made all this happen. Your inner drive to help others in their time of need, directly affected the health and stability of our son. The 3D heart saved my son from precious time on bypass; and actually gave Dr. Bacha the clarity and courage he needed to proceed with the complex surgery which ultimately saved him from the second surgery. REMEMBER how forever grateful we are to your family,"  

We Did It! 
We are all overwhelmed with the energy that everyone put into our Facebook challenge for Matthew's 6th birthday. I would never have imagined that we could surpass our goal of 600 "Likes" and get to 1,000!!!! From the bottom of my heart and Matthew's half a heart, thank you. It really meant the world to us. If you have not liked our page, please do it today!

Season Changes!

Matthew and friends at the
Danbury Whalers Game

CHANGING SEASONS AT MATTHEW'S HEARTS OF HOPE
Something I love about living in the Northeast are the season changes.  Each season is almost bitter sweet - sadness for leaving behind what we have known and become comfortable with the excitement of moving forward to something new with a new-found wisdom. 

Matthew is moving into a new season in his life as well.  He has graduated from PreK after three years and will be starting Kindergarten in August. Mike and I have both been a little emotional about this one but we have encouraged Matthew to embrace this transition as he has all other things in his life with excitement and enthusiasm for the future.

HOCKEY!

Matthew throwing the puck out
at the Danbury Whaler's Game

It was all about hockey this winter!  Matthew's Hearts of Hope
partnered up with two hockey teams, The Danbury Whalers and The Bridgeport Sound Tigers for fundraising events that were fun for everyone and we were able to raise over $2,000 for CHD research.  We would like to thank The New Milford Knights of Columbus for their contributions and support.  We could not have done it without you. 

HUG A HEART PILLOW PROJECTS
Matthew's Hearts of Hope hosted three “Hug a Heart Pillow” Projects over the last 6 months.  

The first was hosted by The Kids Care Club in New Fairfield.  Thanks to Paula Flowers for coordinating that event.  

The second was our annual pillow stuffing party at The Sherman School on February 20^th. Unfortunately we had to reschedule due to inclement weather but we were able to stuff ____ pillows despite the altered schedule.  We even received our proclamation from First Selectman Clay Cope and enjoyed a visit from the Bridgeport Sound Tigers mascot.  Fun was had by all.  

Students at Academy of Our Lady
with the New Jersey Devils mascot.

Finally, on March 24th, we spent the day with students from The Academy of Our Lady in Glen Rock, New Jersey.  Over 500 pillows were stuffed with Polyfill, with a lot of love and a little hope for CHD warriors who like Matthew undergo open heart surgery. 

Thank you to Fairfield Processing who donate all the polyfill, Clothing labels4U who donate all the labels, and JoAnn Fabric for the discounted soft flannel fabric. Also a big thank you to all the volunteers who help pre sew all the pillows and then sew them closed also. We would not be able to do all this without all your help. 

New F airfield High School
Sewing Class

We would also like to thank The Sewing Class at New Fairfield High School who cut, pre-sewed, stuffed and sewed closed over 50 pillows. We received 100 Heart Hero Capes to go with our “Hug a Heart” Pillows thanks to generosity of Junkluggers an organization out of Fairfield, CT.  We will be making a delivery on July 16^th to Children’s Hospital of New York and we are looking forward to putting some smiles on the faces of some tough CHD Warriors!

OUR NEW WEBSITE

Our new look!  We hope you enjoy the new look or our Matthew's Hearts of Hope website.  We are so excited about it and we could not have done it without the help of Steve from PC Guys and Board member Amy Bocompani.  Hats off to both Steve & Amy for a job well done!  Check us out!  www.matthewsheartsofhope.org 

MATTHEW VISITS COLUMBIA
In May Matthew battled a tummy bug that landed him in the hospital for two days with dehydration.  It was a subtle reminder that he is vulnerable and can get into trouble very easily. We had some “downtime” together which was nice and he is back to his happy self again. Matthew faces a Cardiac Cath on July 30^th to take a look at how everything is on the inside of his heart after his Fontan three years ago.  Please keep him in your thoughts and prayers.

THANK YOU FOR THINKING OF US

Lawrence Rice,
Grand Knight Tim Haas,
 myself & Matthew

On June 13^th Tim Haas, Grand Knight of the Knights of Columbus in Newtown, stepped down from his position and to honor him, Matthew’s Hearts of Hope was presented with a $500 check in his name in appreciation for his dedication and hard work during a very difficult time in their community - the Sandy Hook shooting event on December 14^th where 20 children and six teachers lost their lives! We are blessed to call Tim a friend and appreciate the support from the KOC in Newtown where Matthew’s friend Faith’s parents and grandparents live.

Also, Melissa Ann is a CHD Mom in Connecticut who made arrangements at her husband’s High School Reunion two weeks ago to host a raffle, all the proceeds of which are coming to Matthew’s Hearts of Hope. Great Job Melissa, your support is greatly appreciated!

THE POWER OF POSITIVE THINKING

Lastly, one of my all-time favorite books to read is “The Power of Positive Thinking” written by Norman Vincent Peale. I go back to it all the time!  I am blessed to call his granddaughter Katie Berlandi of Sherman my friend and she recently dedicated a whole blog post titled “Find a Need and Fill it” to the work of Matthew’s Hearts of Hope. I look at the picture in the blog post and many memories of a stressful time in my life come flooding back, this was the first time I got to hold Matthew after he was born, I was scared of the road ahead but tapped into my Faith and Positive Attitude that all would be OK!  I could never have imagined the amazing journey I have been on with him and Matthew’s Hearts of Hope, I feel so honored and blessed to be here making a difference! See the blog post below

http://www.guideposts.org/blogs/positive-outreach/find-a-need-and-fill-it

As always, I am grateful for your love and support on this journey with Matthew, we are making a difference because of it!

The Fundraising Committee is full steam ahead with our 4^th Annual “Giving from the Heart” Gala which will be held on Saturday, September 27^th at Anthony’s Lake Club in Danbury, I hope to see many of you there for what promises to be another wonderful evening for our great cause!

Happy Summer,

Marie

Happy New Year!

Happy New Year Everyone, I hope you had some time over the holidays to count your blessings like I

did! I stepped off the life train for a little while and it was great! With a little guy like Matthew in

your life, you learn to treasure the small things and quality time as a family is really important! We

had a lovely thanksgiving at my sister in law Marianne’s house. On Friday, December 13^th we drove 5

hours north to spend the weekend at Santa’s Workshop in Wilmington, New York. I felt like I was in a

magical snow globe for the weekend. We had a great time and made some memories that will last a

lifetime. Christmas and New Year’s flew by and last weekend I took the boys to Mount Snow in

Vermont to try some skiing, they loved it! Matthew did well in the cold as long as he was bundled up

and he managed to ski down some little bunny slopes very well!

The first few weeks of 2014 have been busy already with lots of things going on. First and foremost I

have been speaking to State Representative Joseph McNamara in Rhode Island about mandating

pulse oximetry screening on every newborn in his state. Secondly we are full steam ahead with our

“Hug a Heart” Pillow Projects at three locations, The Kid’s Care Club in New Fairfield on February 6^th,

The Sherman School on February 13^th and Academy of our Lady in Glen Rock, New Jersey sometime in

March. We anticipate over 500 pillows. We have also been approached by Heart Hero’s an

organization out of Omaha, Nebraska for two reasons, one they are featuring Matthew’s story on

their blog in February and secondly they are sending us 100 Heart Hero Capes to go with some of our

pillows thanks to Junkluggers, an organization in Fairfield, CT who are donating the funds to do that.

We are also partnering up with the Danbury Whalers and The Sound Tigers for two fundraisers. The

first one is with The Danbury Whalers on Sunday, March 2^nd at 5:00pm. The second one is with The

Sound Tigers on Sunday, March 30^th at 3:00pm. The proceeds from all the tickets that we sell will

come back to our organization. Tickets will be available for purchase on the website for both games

starting next week.

Lastly and most importantly I are proud to announce the recipients of the Matthew's Hearts

of Hope grants which will be going to physicians who are furthering Congenital Heart

Defect research.  Each recipient will be receiving a $5,000 grant.

Dr. Hannah Fraint - Morgan Stanley Children's Hospital of New York

Dr. Joanne Chiu - Morgan Stanley Children's Hospital of New York

Dr. Shaun Mohan - Children's Hospital of Philadelphia

Dr. Simon Lee - Mount Sinai Hospital, New York

Here is what one of the winning hospitals had to say about the impact that MHOH is having:

Marie,

Thank you so much for supporting such important research in CHD with Matthew’s

Hearts of Hope Research Grants and for founding the Matthew’s Hearts of Hope

organization!  We are honored to have one of our fellows be the recipient of one of the

grants (congratulations Joanne!)!!  We will certainly keep you posted on the findings of

Dr. Chiu’s research as the year goes by.  The grant money will certainly make a huge

difference in making ongoing study possible!

Thanks again!

We are making a difference for sure in big thanks to all your support, thank you from the

bottom of my heart and Matthew’s half a heart!

Michael, Ryan & Matthew visit with Santa at Santa’s Workshop in Wilmington, NY. They made it onto the good list this year!