Miracles for Madison/ The MRH Proj
Miracles for Madison
Our 20 week ultrasound was supposed to be one of the happiest days of our lives; we were to find out that we were having a baby girl. Unfortunately, after finding out the gender, the doctor also had some devastating news to tell us. We were informed that something was wrong with our sweet baby girl’s heart. She was soon diagnosed with a CHD known as Hypoplastic Right Heart Syndrome (HRHS)/ Pulmonary Atresia with Intact Ventricular Septum with suspected Coronary Dependent Sinusoids.
Despite this devastating news, we knew that she was given to us for a reason ,and that as her parents, we would do everything we could to help her. We decided to name her Madison, which is derived from the names Matthew and means “gift of God” and Matilda which means “strong fighter.” We knew this was the perfect name for our baby girl as she truly is the best gift we could ever receive. We also knew that with the long road ahead she would undoubtedly be our little fighter. Since her birth date on June 17, 2016 she has lived up to her name more than we could have ever imagined. With the help of an amazing team of surgeons, doctors, nurses, and specialists Madison has begun her heart journey. She underwent her first heart surgery on June 29, 2016 and has been recovering in the NICU since that time. While we were hoping to have her home in a couple of weeks, we recently learned that Madison’s condition has worsened and that she is in need of a heart transplant. As of July 15th 2016 she has been placed on the waiting list for a donor heart. Our love for our baby girl and the love and support of family, friends, and even complete strangers has been carrying us through this difficult time.
All generously donated funds will be used for Madison’s present and future medical expenses, commuting expenses and various living expenses related to Madison’s care. Any funds not used will be donated to various charity organizations dedicated to raising awareness for and researching CHD (congenital heart diseases) and also to the Morgan Stanley Children’s Hospital at New York Presbyterian.
We will also be using this page as a place to share updates on Madison’s transplant status and heart journey so please check back frequently. Our loved ones, friends, and members of the CHD community should also feel free to share words of support here.
Thank you from the bottom of our hearts for all of your prayers, love, and support.
Madison’s loving and proud parents,
Matthew & Stephanie
We are happy to announce that we are co-chairing the "Heart Strong" Annual Golf Tournament again this year with Hayden's Heart. The golf outing will be held on Friday, June 14th at Preakness Valley Golf Course in Wayne, NJ (same course as last year). All of the money raised will be donated to Claire Ciardi, an 8-month old suffering from a number of congenital heart defects, and Hayden's Heart Foundation for families affected by CHD.
You can read more about the golf tournament and Claire online in the packet. It also includes sponsorship and door prize donation options as well as the registration form to golf. Signup can be completed online through Hayden's Heart's website or by e-mailing rob.dorsett@haydensheart. Please pass on to any family, friends or businesses who you think would be interested in attending and/or donating. For those who do not want to golf you can still attend the event and purchase the $50 lunch with drink option.
If you signup by May 14th, you receive an early bird registration discount! See the flyer.
Please let us know if you have any questions and we hope to see you there!
Matt & Stephanie Cohen
Hope everyone is doing well! We just wanted to give a quick update about what we have been up to. We’re thrilled for the opportunity to support the wonderful causes outlined below. We look forward to seeing and experiencing the many lives positively impacted by these initiatives.
We would like to officially announce the following donations made by The Madison Rose Heart Project:
1. $10,000 to the Hayden’s House of Healing Campaign to guarantee a room in Madison’s honor once the new house is built. The house will be a space for retreats to help people who have experienced any type of loss going forward, not just from CHD.
2. Sponsorship for a bereaved mom to attend the Healing of the Heart Retreat this past summer.
3. Partial sponsorship for a couple coming to the upcoming 1st Woven Couples Retreat that we are co-hosting in early November with Hayden’s Heart.
As you know we are so grateful to Hayden’s Heart, Ady and Rob, for all of the support they have given us through our loss and healing process. It’s an honor to partner and support their organization and it’s efforts for our first significant use of The MRHP funds. We’re looking forward to helping lead the retreat with Ady and Rob. Couples from all over the U.S. will be coming to work through the healing process of losing a child from CHD. Stephanie has also assumed a role on the Hayden’s House of Healing Campaign Committee that will be dedicated to raising funds and helping make this house a reality for so many very soon.
We want to thank everyone who has donated over the past two years in honor of Madison as it truly means so much to have your love and support in helping us to honor her memory and help other families who have lost a child to CHD or are currently fighting the battle. Without your donations and support, none of these efforts could be possible!
Lastly, we’re also excited to announce that the website for The Madison Rose Heart Project will be up and running shortly. In the meantime, please email or contact us directly for any questions or to make a donation to the foundation. As you may have seen, we have now received 501c3 tax-deductible status!
Please feel free to keep in touch and share ideas and fundraising opportunities with us as we continue to grow our foundation. We have so much more we want to do so please continue to remember us during the upcoming giving season as we continue to grow and to help others just as you have helped us!
All our love,
Stephanie and Matthew Cohen
To learn more about Hayden’s House of Healing and how you can donate directly to the house campaign use the links below.
It's that time of year again- We are approaching our "Heart Strong" 5th Annual Golf Tournament that we are co-chairing again this year with Hayden's Heart. Attached is the event flyer! The Golf Outing will be held on Friday, June 8th at Preakness Valley Golf Course in Wayne, NJ (same course as last year followed by lunch). All of the money raised will be donated to Rylan Davidson, an infant from Connecticut who is fighting a multitude of Congenital Heart Defects, and Hayden's Heart Foundation for families affected by CHD.
You can read more about the golf tournament and Rylan online and in the information packet we can send you. It also includes sponsorship and donation/raffle prize options as well as the registration form to golf.
You can signup online on using the race roster link below or from Hayden's Heart's website. Please pass on to any family, friends or businesses who you think would be interested in attending and/or donating. For those who do not want to golf you can still attend the event and purchase the $50 lunch with drink option.
If you are a business who would like to donate a door or raffle prize, you can contact Stephanie at firstname.lastname@example.org with any questions or for pick up/shipping info. We are happy to pick up from local Hoboken businesses if needed by June 1st. Giftcards, gift certificates, items, and gift baskets all make great prizes at the event.
If you signup by May 8th, you receive an early bird registration discount!
Please let us know if you have any questions and we hope to see you there!
Matt & Stephanie Cohen
On this Giving Tuesday we want to remind you about our Spirits & Cheer Wine Tasting Fundraising Event coming up next weekend on Sunday, December 10 from 2 - 4pm at Black Rail in Hoboken, NJ. All proceeds from the event will go to our non-profit foundation, The Madison Rose Heart Project. There will be wine, coffee cocktails, chocolates, apps and a bunch of great raffle prizes from local Hoboken businesses.
Tickets are $25 per person and can be purchased at the link here. https://spiritscheer.splashthat.com
We would love to see you all there! Only 50 spots available.We are also still accepting items ( event tickets, gift certificates to local businesses, etc.) that could be donated as raffle items.
If you can’t make the event, you can still purchase wine from our wine sale with Grapeful at the link below. 20% of the proceeds from the sale go to The Madison Rose Heart Project. Shop now and drink wine while giving back for a good cause! Perfect gifts for the holidays and sharing with family/friends in honor of Madison!
Shop our Grapeful Wine Sale Fundraiser here:
Remember CHD is the #1 birth defect and heart defects can affect anyone at any age. More CHD research, awareness and funding is desperately needed to help save more lives! Thank you again for your generosity in honor of Madison and for helping others affected by CHD on this Giving Tuesday!We are so grateful for our time with Madison and for each and everyone of you and all of your love and support!
Stephanie you are so brave! My 2 year old daughter "Madison" saw the picture of your beautiful little girl last night as I was scrolling through my FB feed and couldn't stop talking about how cute the baby was and how she wanted to hold her and kiss her. It warmed my heart and made me realize how any one of us could be in your situation and how scary it must be. My daughter was born at 36 weeks and was also in the NICU and I remember thinking it was one thing after the next and why was this happening to me. I will tell you that you will look back on this experience as a distant memory when your beautiful little girl is running around on the playground. Stay strong for your daughter and your family and know that we are all thinking of you and praying for baby Madison. Girls are strong and she sounds like a tough cookie. Best wishes!
Thinking of all you and keeping you all in my thoughts and prayers!
Stephanie, Mike and I will gladly fund your walk, as my own dear brother had an inoperable VSD and he was taken from our family too soon. We are very sorry for your loss and can never really know what you are going through, but we will pray for you and keep you in our thoughts. Judy Lathrop Samsel and Mike Samsel
I am so sorry for your loss. Now Madison is your Special Guardian Angel. Words can not express what I and many others want to express to you. Madison was here only for a very short while. but she touched so many. Madison. Please don't eat the clouds and pull the feathers off the other angels wings o.k. Madison we will all miss you.
Please count me in for fundraisers and walks and anything else you need
She's in the sun, The wind, the rain. She's in the air you Breathe with every Breath you take. She sings a song Of hope and cheer, There's no more pain No more fear. You'll see her In the clouds above. Hear her whisper Words of love. You'll be together Before long, until then Listen for her song. Christy Ann Martine
I am so saddened to hear of Madison's passing! She is a little angel in the hands of God now. My thoughts and prayers are with all of you!
I hope to be there.. Prayers
I'm deeply saddened to hear of Madison's passing. She touched my heart in such a deep way every time I looked at her photos. I'll never forget her, your little warrior daughter. Stephanie and Matt, I send you my most heartfelt condolences.
My heart is saddened by this news. My thoughts & prayers are with you & your family. Your lil angel will always be with you.
Rest in peace sweet little Madison. Heartbreaking. Stephanie and Matt, may love and support from those around you help you get through this difficult time. Stay strong. So very sorry for your loss.
I am so very sorry for your loss.
Sending u comforting hugs n prayers
Thinking of u all
She is sooooo beautiful... Keeping her in prayers n lov.
Sending u hugs and prayers every day
My prayers and thoughts are with you! My family is almost going through the same thing, and I'm hoping you all can donate or spread the link too. It's called Isabella Hakitt's Miracle
So blessed to have met my grand-niece today! Madison is such a beautiful baby girl with long fingers and toes, deep blue eyes and a perfect little face. Samantha and I are in love! Steph & Matt, you are such loving, caring parents and your strength shows every time you look at Madison. xoxoxoxo
Continuing to keep Madison in prayers...thank you for the uodateseveryday