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Faces of the Foundation:
2015

Condition:
Pfeiffer Syndrome

Resources:
Mayo Clinic

Genetics Home Reference

WebMD

The National Craniofacial Association

 

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Meet Dominic

I read a story about Dominic in 2014. His precious life is such a gift and I was immediately taken in by his human spirit. I followed his story on a Facebook page setup by his parents called Dominic’s Journey. In 2015, I reached out to them to ask if for our “Faces of the Foundation”, if Dominic could be our face for June. After explaining what Courageous Faces Foundation does, we received a resounding Yes! They were especially excited since Dominic is turning two on June 7th.

From the conversations I have had with EJ & Eileen, I can tell they are wonderful people. They have a busy life with growing boy’s Dom and his older brother Donovan as well as they both work outside the home.

Dominic is a person who came into this world with some differences and medical challenges just like millions of others. Some people have differences you can see, others have differences that are not so apparent. Many have medical challenges that are much greater and others have some that are not so complex. Dominic’s physical differences and medical issues are more extreme than most, but when you see a photo or video of him you should see a child that is beautiful and alive. I have read comments about how people say they feel sorry for the family.

I dont feel sorry for the family, I feel joy. Joy that Dominic is here and that he is celebrating his second birthday this month! How fortunate his family and their friends are to get to know and personally watch him change and grow. How great that Eileen & Ej share Dom’s journey and let all of us be a small part of it! I will be flying to Maryland and I am excited to meet the family to celebrate Dom’s 2nd Birthday.

More updates and photos to come!

Enjoy the photos and read Dominics story below from his parents. Check out their Facebook page Dominic’s Journey www.facebook.com/BabyDominicsJourney and please donate if you can.

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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