Celebrating St. Patrick's Day With Matthew

It was a great St. Patrick's Day this year for us.  Matthew was with his friends in school enjoying the holiday festivities!  Matthew's mom Marie, who is from Ireland, was able to spend an hour with his Kindergarten class reading a book about Leprechauns, taking them on a treasure hunt throughout the school, and eating Irish Soda Bread.  Marie even pulled out her accordion and played some Irish tunes while the kids danced.  Fun was had by all and we are thankful for these small little celebrations that we can share with him.

We are still working on getting his numbers where they need to be but he is happy and thriving and that is all that we can ask for.

How Many Pillows Did We Stuff?

It has been an unbelievable few weeks for Matthew's Hearts of Hope.  We had 5 different pillow projects totaling 984 pillows stuffed with poly-fill, love and a little hope one child to another!  We would like to thank . . .

• JFK Elementary School in Brewster - 274 pillows
• Washington Boys and Girls Scouts - 200 pillows
• Sherman School - 435 pillows
• Kids Care Club in New Fairfield - 25 pillows
• St. Francis Xavier 5th Grade Religious Education Class - 50 pillows

We would also like to thank Fairfield Processing for donating the poly-fill, Clothing Labels 4u for the tags, JoAnn Fabric for the discounted fabric and lastly all the cutters, pre sewers and sewers who helped behind the scenes before, during and after all the pillow projects.  We could not have done it without you!

Our friend Allison Heffer is a Child Life Specialist on the cardiac floor at Children's Hospital of New York and sees the pediatric heart patients when they come down from ICU.  Here is what she had to say about how important the pillows are for these patients:  “They are a God-Sent to the kids in the hospital. They bring a smile to their faces and they help their recovery process go faster.”

So, they are more than just pillows!  Thank you to everyone.
 

Exciting News  - Babies Heart Fund Gala

Marie and Mike Hatcher were cordially invited to the Babies Heart Fund Gala on March 5th in New York at the Pierre Hotel.  To be in a room with leading experts and advocates for CHD research is an honor in and of itself.  However, it was exciting to find out that the Babies Heart Fund chose to further fund the project started by Dr. Fraint and Dr. Chelliah because of it’s proven impact in the planning of surgery for complex CHD babies and children- the same project that Matthew's Hearts of Hope funded and helped to get off the ground a year prior.  We were so happy for Columbia and felt proud that it all started with a small grant from our organization.

Impact is the goal for most nonprofit organizations.  In this case, we are overwhelmed at the impact that our little organization was able to make and to see the ripple effect it has made in the world of CHD.  And, without your support it would not have happened.  So, thank you so much for all of your support!

Left to right,  Mike Hatcher, Dr. Emile Bacha, Dr. Michael Snyder, Dr. Hannah Fraint, Todd Pietila from Materialize and Marie Hatcher.

 

 

 

State of Vermont Working on Pulse Oximetry Screening

The State of Vermont is working on adding mandated pulse oximetry screening to their newborn screening panel this year which would negate the need to run a bill through legislation. 
State Representatives Smith and Lippert are supporting Dr. Harry Chen, Commissioner of The State of Vermont Department of  Health, in this effort   Great job Vermont!!! 

We Had a Great Time!

A wonderful time was had by all at the Danbury Whaler's Game on February 22nd!!!  Thank you to the over 100 people who came out to support the Whaler's and MHOH!

Sunday, March 15th, 50 people from Sherman and New Milford attended the Bridgeport Sound Tigers game!  Thank you St. Francis Xavier Church, The Knights of Columbus and the Ryan Family for organizing this event.

On Sunday, March 1st, Porter and Chester Institute took on the Puck Challenge and, if someone from PCI had won, Matthew's Hearts of Hope would have been the recipient of a matching gift of $10,000!  Thank you for honoring us even though there was no winner.

 

3-D Heart Featured in Columbia University Medical Center Periodical

Check out our Facebook page to read the Winter 2014 - 2015 edition of the Connections Magazine published by Columbia University Medical Center!  Exciting to read all about the amazing things Dr. Bacha, Dr. Chelliah and Dr. Fraint are doing!

Click here to read!

 

Here are some great pictures from our pillow projects this past month.  Thank you so much!!!

Happy New Year and An Update on Matthew

Happy New Year to you all.  We hope that you enjoyed the holidays and that 2015 has started with health, happiness and joy.

Since our last update, Matthew is back to his old self - actually better than his old self if you can believe that.  He quickly returned to half days and then full days back in school and his food restrictions were lifted so now he can have pizza with us on Friday night! Despite the illnesses running rampant, Matthew stayed healthy!  So healthy in fact that he called from the nurse's office just this week to say his legs hurt.  Not wanting to take any chances I went to pick him up.  Upon returning home, Matthew admitted that his legs really did not hurt that much but that he missed me and wanted to be with me.  After spending two months together, he just missed me.  You can't have a better outcome than that.

Upcoming Events
Things are moving in to high gear already with several groups running pillow projects and many plans in the works for this year.

We have several groups working on preparing pillows for the pillow project.  We are so grateful for their help and support.  Our goal is to send 500 pillows to Columbia throughout 2015.  The Sherman School pillow project will take place on February 24th so mark your calendars.   
Also, our friends at the Knights of Columbus and St. Francis Xavier Church in New Milford have generously offered to sponsor a hockey day with the Bridgeport Sound Tigers on March 15th at the Webster Bank Arena in Bridgeport.  More information is listed below and all proceeds will go directly to Matthew's Heart of Hope.  A great day for the family.  We hope you can join us.
All the best to you all!

Wrap Up 2014 - Looking At 2015

Hi everyone!

It has been a few months since I blogged so I hope you will forgive me.

Update on Matthew

As you all know, based on testing back in July, Matthew was identified as having to go through another surgery to correct a narrowing of his Fontan site.  For several months we went back and forth trying to decide if we would go through a full open heart surgery or if we would just put a stent in to widen the narrowed section.  After many consultations, we determined that the full open-heart surgery was our best option.  And thank goodness we made that decision.  Not only were they able to repair the narrowed Fontan site but they were able to fix several other things that needed attention.  If we had not made that decision it was certain that we would have been back in surgery at a later date.  God is good.  Thank you to Dr. Bacha, Dr. Snyder and everyone on Matthew’s team who supported us through this difficult time.  We will give you a bit more detail later on to share with you some of the highlights.

MHOH & 3-D Heart Goes Around the World

During this process we experienced something very special.  October 1st started like any other day - getting the boys on the bus and settling in to my daily to do list.  I knew that the Danbury News-Times was printing a front page article that morning about Matthew's Hearts of Hope grant recipient Dr. Hannah Fraint and the 3D heart she was able to create using MHOH grant funding.  Little did I know that this Danbury based article would reach further than we could have ever dreamed. 

Dr. Fraint created a 3D heart model using an MRI image and  a new cutting edge 3D printing process.  This process enabled her to replicate the heart of a baby with a very severe Congenital Heart Defect (you know him as "Baby S").   Normally, the surgeon cannot plan in advance how to approach the repair until he has opened the chest and can actually see the severity of the defect.   Having access to the model prior to surgery, the surgeon was able to plan out his approach and completely change the entire surgery.  Not only did it save "Baby S" from another surgery, it gave him a normal life expectancy! 

The story appeared as expected and I was so happy to know that area residents could read about the impact we were able to make with one of our grants.  What I did not know at the time was that the Danbury News-Times article (click here to read New-Times) caught the eye of a reporter from the Independent in the UNITED KINGDOM (click here to read Independent).  After that, the story took on a life of its own.  Within a few days Matthew's Hearts of Hope received calls from news outlets in Japan, Croatia and even my family back in Ireland were calling to say the story reached the Irish Examiner (click here to read Irish Examiner).  It was such an incredible feeling knowing that people around the world were hearing about the impact CHD research is making for children in the US and that Matthew's Hearts of Hope played a part.

But there is more!  Ultimately, the story ended up on CBS This Morning and CNBC.  Dr. Bacha who performed the surgery had the opportunity to share how this simple 3D model has completely changed the way they were able to do the surgery on children with severe Congenital Heart Defects.  Truly a moment to remember.

We Live In A Great Community

While we were anxiously awaiting Matthew’s surgery date, when we received a call that the New Milford Wave teachers and the New Milford police were hosting a charity basketball game and they wanted to donate the proceeds to Matthew’s Hearts of Hope.  Unfortunately, Matthew would be three days post op but graciously accepted their kind offer.  Mike, Michael and Ryan attended the game and graciously accepted their generous donation.  Everyone signed a big card for Matthew that was waiting for him when he got home!

Matthew's Surgery

Our Brave Little Man

Monday, November 10th Matthew was taken into surgery at Columbia.  As always, the many hours of waiting and praying were overwhelming.  But, we felt the love and prayers of everyone around us and it really carried us through.

Matthew’s surgery went well and his post-op recovery was amazing.  Even his doctors were thrilled at how well and how quickly he recovered.  He was out of ICU in 2 days, home in 1 week and was back to school three weeks after that.  It was truly amazing to see how much better he was feeling even as compared to before the surgery.  And, despite the illnesses running rampant, Matthew stayed healthy into the New Year!  So healthy in fact that he called from the nurse's office just this week to say his legs hurt.  Not wanting to take any chances I went to pick him up.  Upon returning home, Matthew admitted that his legs really did not hurt that much but that he missed me and wanted to be with his mom.  After spending two months together, he just missed me.  You can't have a better outcome than that.

Feeling the Love from Westfield State University

Matthew's Hearts of Hope would like to thank the Westfield State University Dance Company for their generous donation to our organization. Co-president LauraBeth Davidson (daughter of our beloved Sherman School teacher Cathy Davidson) suggested Matthew's Hearts of Hope as a recipient of funds raised during a recent dance event. Thank you so much LauraBeth!

Here is a note from LauraBeth explaining their organization and how they came to make their donation to MHOH:

"As the Westfield State University Dance Company, we are the largest student run club on campus. We are composed of a student executive board along with 110 dancers. For each show we perform, we collect donations for a charity. This fall we were thrilled to donate $1,000 to Matthews Hearts of Hope! The show consisted of a variety of student choreographed dances and the most heartwarming part of the event was when Matthew's story was shared. This resulted in an outpouring of generous donations! We love to perform and make a difference in the lives of others!

As the co-president of the company I was very excited to be able to donate to this wonderful cause! I attached a picture of our company and I can't wait to see you and Matthew soon!"


Coming Up in 2015
We have a lot to look forward to in the coming months. We have pillow projects, the Danbury Whaler’s hockey game on February 22nd and our friends at the Knights of Columbus in conjunction with St. Xavier Church in New Milford who are hosting a hockey event with the Bridgeport Sound Tigers on March 15th.

Hope to see you all soon!

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!