President’s Blog

Meet Dominic

  • Determined and an incredible problem solver
  • His older brother Donovan is his hero
  • Condition: Pfeiffer Syndrome

Dominic (Dom) loves to play, adores his older brother, Donovan, and has high hopes—to become a Jedi Master of all things iPads and iPhones. He has overcome so much; he just might make it.

Dom was born with one of the worst cases on record of craniosynostosis. All the bones in his skull had fused and that altered his facial and cranial development. Everything was affected. His eyes, his jaw, his nasal passages, intellect and even his arms and legs.

He’s endured dozens of major surgeries and will face more as he grows and develops. Yet, even though his development has been delayed, he has what his mom calls “a remarkable spirit, one of the most determined persons ever.” He’s also described as someone who doesn’t give up until he’s conquered the challenge in front of him.

That go-for-it attitude has shaped their family motto, amidst all the obstacles: “If he can, then we can. And we will.”

Things his parents think Dom, who is non-verbal, would say about why he is thankful for the Courageous Faces Foundation:

The Courageous Faces family understands the unique challenges we face just because we look a little more unique than others. I am so fortunate to have many big brothers and sisters (other Inspirational Champions) I can look up to and lean on as I get older who understand what it is like to be different.

Our family loves Courageous Faces.  We are a tight knit group who stays in touch, root for and sincerely want the best for each other. Trish and everyone are family to us as they remind my parents that there are good and genuine people in the world.

One of the best things that’s happened to me since becoming involved with the Courageous Faces Foundation is the chance to travel and meet some of the purest souls my parents have encountered.  Meeting new people that are different like I am and the advice they offer my mom and dad to help me has been so helpful and hopeful.  Being a part of this community is great and my entire family is grateful they found us.

Dominic’s Story

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Eileen (Mom) shares Dominic’s story…

Being pregnant with Dominic was great. I felt great and had nothing to complain about other than the basic swollen ankles and having 3 flights of stairs to climb daily. Around 35 week my amniotic fluid registered low and my doctors visits increased in frequency. The thought was that Dominic was really low on my cervix but no causes for panic. Memorial Day weekend 2013, I was placed on partial bed rest and was made aware of an artifact in my sonogram. Again, no one seemed concerned so we thought nothing of it.

About a week later, one doctor suggested we visit Childrens National Medical Center in DC for an MRI. Immediately the anxiety shot forward. No one thought twice about concerns on any recent visit but now hot words like Childrens and MRI brought in a tidal wave of fear. I cried in my car and I think at that moment I knew something was wrong. June 6th, 2013 I had the MRI with my husband by my side. Six hours later we were in a room with several doctors. My husband is great at reading people’s body language and I could tell thru him we were not going to hear “your baby is fine”. The MRI uncovered that Dominic had craniosynostosis and that it may or may not be syndromatic. At that point there were not many answers they could provide and had several questions themselves. They recommended we go to term (roughly 2 weeks away) and plan from there. My husband dropped me off to head to his office and I headed to my other scheduled doctors appointment. At my doctor appointment, my doctor expressed concern and mandated that I be admitted right away and that I would be induced in the morning.

On June 7th, 2013, Dominic “Dom” arrived and his Journey began. His craniosynostosis was one of the worst on record where as all of his skull’s sutures had fused which altered his facial and cranial development. His eyelids had developed behind his eyes so roughly 80% of his eyeballs were exposed. He would blink and the lids would clamp down on his optic nerve and further propel his eye balls forward. HIs nasal passage, jaw, legs and arms were also impacted. He had surgery to pull his eyelids forward at 2 days old, they seperated his skull to alleviate the pressure on his brain at 10 days old, a G-Tube installed at just over a month old. Since he was born, Dominic has had over 13 surgeries including a tracheostomy and VP & VA shunt and we anticipate many many more as he grows and develops.

Dominic has improved over the course of his short life but is severely delayed in his development. However, his spirit is remarkable. He is the most determined person we’ve ever met and is an amazing problem solver. He’s overcome almost everything thrown in his direction and serves as our hero. He loves to play and adores his older brother, Donovan. We don’t have much help to care for Dom, Donovan, maintain our careers, manage our marriage and attempt to stay sane but the four of us do it together. Our family motto is “if he can, then we can”. And we will.

Dominic’s Photos

Dominic’s Blog

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