In order to understand the purpose and meaning behind the Matthias Parke Maloof Scholarship, it's important to know his story, as told by his mother, Danielle:
In January of 2016, my husband, Jonathan, and I found out we were expecting another baby. After having a child with CHD and troubles carrying pregnancies in the past, our reaction to this news wasn't that of your typical expecting parents. We feared miscarriage and we feared another baby being born with CHD. Jonathan and I waited to hear that we had a heart-healthy baby at our 22-week fetal echocardiogram before celebrating. It was confirmed at that appointment that this baby had a perfect heart.
To know we were finally going to get that moment to hold a healthy baby, and not have him stripped from our arms to undergo life-saving procedures, meant everything to us.
But despite all that our family had been through with Remington and previous miscarriages, we would not get that moment. God had a different plan. On August 28th, 2016, just three weeks shy of his due date, our perfectly healthy baby had an unpredictable and unpreventable accident in my womb and God called him home. We named him Matthias Parke Maloof, choosing "Matthias" for its meaning: Gift from God. This perfect baby boy weighed 6 pounds, 13 ounces and was 19.5 inches long. Matthias looked just like his oldest brother, Elwood.
Life here on earth will never be the same, we miss him every minute of every day, but we look forward to the day we get to hold him in our arms again.
The Scholarship: Shortly after Matthias's funeral, Danielle and Jonathan had dinner with their close friends Ryan and Tasha Wines. Like so many others, they vowed to keep Matthias's memory alive. They came up with the idea of establishing a scholarship fund in his honor.
One thing the Maloofs discussed with Ryan and Tasha is that when a family is hit with a crisis or tragedy, the ones who can often get overlooked are the siblings. Siblings are the ones who have to bear the brunt of the family crisis. They are the ones getting carted from place to place, woken up at odd hours, left with family members or babysitters, or they themselves have to be the ones in charge. Yet with everything they go through, they don't complain because there's no room for it or simply because it's all they've ever known. They go with the flow because their sibling's survival depends on it, they step up when called upon and often don't even understand the importance of their role in everything. Through all of the chaos and heartache, they hurt just as much, all while taking on the burden for the entire family.
"Whenever we are in the hospital with Remington, I think about my healthy boy Elwood at home and I just have to assume he is okay, because all I can focus on is my other baby who is sick. I assume Elwood is safe and being loved by family and friends, but if I take a step back, I know he misses us. He misses being together as a family, he wonders where his brother is and how he is doing."
In realizing the crucial role of siblings in CHD Families, The Maloofs and Wines set up the Matthias Parke Maloof Scholarship fund to honor siblings who sacrifice so much for their families. Although Matthias isn't here with us physically, he is just as much a brother to Remington as Elwood is, which is why we want to use his memory to help other brothers and sisters of CHD warriors.
This scholarship will serve to honor siblings who represent love of family, unity, strength, courage, resilience, perseverance, sacrifice, honor and hope. Each year we will select a sibling, or group of siblings, who represent all of the above. Save the Heartbeat will present them with a monetary reward in honor of our precious angel, Matthias Parke Maloof.
Inaugural Recipients: Colton, Gavin, Dylan and Nixon
Save the Heartbeat had the absolute honor of making the Fien brothers the first ever recipients of the Matthias Scholarship at our charity gala on February 4th, 2017. The entire CHD community thinks about and prays for these boys all the time. We felt the need to recognize the sacrifices they have made, and the courageous way in which they have handled themselves in the face of unimaginable pain. Read more about these amazing brothers and their CHD warrior sibling, Lawson, at our blog.
2018 Recipients: Henry Michaelis & Noah, Savannah, Santino, Lucas, Tatum and Luna Esparza
This year, a unanimous decision was made by our board to award the scholarship to TWO groups of siblings. These CHD families that have been chosen have been through more than their fair share the past 10+ years, but particularly this past year. For the first family, the only way to paint the full picture of what these siblings endure is to briefly tell you a little bit about their heart warrior. He is a ten-year-old boy who battles not ONE but SEVEN heart conditions, he has a pacemaker, and is in heart failure. He’s undergone a total of 18 procedures, which include multiple open heart surgeries. Most likely, he will also need a heart transplant in the near future. There are SEVEN KIDS total in this family. Compassion, patience, flexibility, and understanding has become part of their family DNA. Having a brother or a sister with CHD is a trial in itself. But this set of siblings is even more unique because some of them battle their own health issues. Without going into too much detail, some of these health issues include, severe asthma, a brain tumor, and of course severe emotional stress. Not only are these six siblings having to be strong and supportive for their heart warrior but as a unit of seven, they’re always going to have to support one other. Their journey is only beginning, it might only get harder, but this family needs a break. We were proud to present the Matthias Scholarship to, Noah, Savannah, Santino, Lucas, Tatum and Luna- siblings to heart warrior Maceo Esparza.
The next family is a little bit different because their heart warrior is in fact a heart angel. We won't talk about her heart condition because in no way, shape, or form did it define who she was. Noah Bella Michaelis passed away on January 3, 2017 after a 12-year battle with CHD. Noah was a CHD ambassador, and through an annual event she hosted with her parents called “Noah’s Festival of Life," she raised tens of thousands of dollars for the CHD community. Noah’s zest for life was unlike any other. The heaviness of being a heart kid never once stopped her from living life to the fullest and always helping others. She was an avid reader, philosopher, magician, foodie, animal activist and adventurer. She taught people to never leave a stone unturned or a curiosity to be unquestioned. Adventure was something that was always awaiting. Noah was and is a light that will forever shine so bright. Noah passed away three months before her brother, Henry was born. Because of this, Henry will get to know and love his sister through the legacy she has left behind, as well as through those of us who have vowed to keep her memory alive forever. There is no doubt in our hearts that these two will always be connected for many reasons, one of those being, Noah was actually the one who chose his name. Henry has a lifetime to get to know his sister as her spirit will always be with him. Knowing that Noah and Matthias are together brings us immense peace. It was our great honor to award the Matthias Parke Maloof Scholarship to Noah's baby brother, Henry Michaelis. To quote Noah, “who needs a map, go get lost!”