The Fight of a Lion

Nicholas is a 4 year old boy, who was born with a rare craniofacial condition called Hemifacial Microsoma (HFM). This condition typically affects one side of the face and can cause an underdevelopment of the jaw, ear, eye and facial nerves. This condition is not the same for everyone and can have a spectrum of features. For Nick, it affects his right side and he is considered moderate to severe.

**HFM is just one condition that is just one part of another syndrome Nicholas was diagnosed with, called Goldenhar Syndrome. Goldenhar Syndrome can also affect the spine, kidneys, heart and other vital organs in addition to the face and skull. While this is another syndrome where symptoms range from mild to severe, Nicholas is considered on the mild side and has only been found to have part of his spine involved (other than the HFM)**

We have undergone every genetic test that was offered to us, numerous ultrasounds, fetal MRI's and a fetal echo. Nothing has been found to be the cause of his condition (which can be typical of HFM) and at times this can be considered a spontaneous underdevelopment.

He was born prematurely and spent the first 83 days of his life in the NICU, which included many tests, scans and his first surgery at 9 weeks old. Typically, people who have HFM may have to undergo multiple surgeries throughout their life to help support their breathing, eating and overall quality of life. So far, Nicholas has had 4 surgeries and will likely need many more as he grows. He has overcome many hurdles and has exceeded expectations of anyone who has met him. He has been working hard with therapies to strengthen his milestones.

Even though Nicholas is strong, this will not be an easy journey for him. He has multiple specialists that require appointments and tests several times a year with always a potential of needing to go back to the operating room to correct or improve his airway (which is our main priority). We have to take it step by step as he grows and closely monitor his development to catch anything that may harm him in the future.

Our fundraising is to help support him as he steers through the obstacles thrown at him and to make sure he gets the care he needs throughout his life. We are so blessed and thankful for everyone who has shown love towards our family and we are forever grateful. Anything helps, even if it's words of encouragement to keep fighting the good fight.

Thank you!

The Lipiec Family