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!
Monday, January 5, 2015
Thursday, January 1, 2015
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.
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.
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!
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| 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
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!
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Saturday, October 4, 2014
An Exciting Four Months
4th Annual Giving From the Heart Gala A Success
4th Annual Giving From the Heart Gala A Success
On Saturday,
September 27th Matthew’s Hearts of Hope hosted
it’s 4th 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 22nd 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.
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| MHOH Fundraising Committee |
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| 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.
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!
Wednesday, June 25, 2014
Season Changes!
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| Matthew and friends at the Danbury Whalers Game |
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!
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| 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.
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 20th. 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.
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| Students at Academy of Our Lady with the New Jersey Devils mascot. |
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.
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| New F airfield High School Sewing Class |
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 30th 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
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 30th 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
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| Lawrence Rice, Grand Knight Tim Haas, myself & Matthew |
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
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 4th
Annual “Giving from the Heart” Gala which will be held on Saturday, September
27th 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
Tuesday, January 28, 2014
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 13th 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 6th,
The Sherman School on
February 13th 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 2nd at 5:00pm. The second one is
with The
Sound Tigers on Sunday,
March 30th 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!
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