Mason, a Pfeiffer Syndrome Angel

Mason was born with a very rare genetic disorder called Pfeiffer Syndrome. This condition causes premature fusing of the bones and skull. This is not something that was discovered before she was born. When Mason was born (sunnyside up, of course), we discovered her craniofacial abnormalities along with a short umbilical cord, collapsed lung, and an enlarged heart. She was whisked off to the NICU to start her 6-week stay. 

Her first cranio surgery was at 10 days old to remove parts of her skull. Mason's skull was labeled "cloverleaf" because it was completely fused together, leaving little room for her brain to grow. This also caused pressure and upper airway complications that would later lead to a g-tube and tracheotomy. 

She had many other surgeries during her 21 months here on earth, and through it all, she was the happiest, strongest little girl. She went in for her last surgery like any other, smiling and talking to her nurse and child life friends. The hospital almost felt like a second home since we were frequent fliers. This surgery was designed to give her brain more room to grow, but she suffered a massive stroke during recovery and wouldn't be returning home with us. 

We decided to donate Mason's organs. They were able to use her kidneys and heart valves. Masey Girl is our little hero. All Mason knew was love; her nickname is Sunshine because that is exactly what she is: pure love and light.

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