CHARGE on for Noah

Tuesday, December 16, 2014

On my second night in residence at MSVU, I went out on the town with the girls on my floor. For the most part they all knew each other having lived in res the previous year and I was the new kid. I had an amazing time, totally hit on a floor mate's best guy friend, danced until 3am and was feeling the effects of the night before the morning after.

Laura came into my room the next day and we chatted for hours. Turns out we liked a lot of the same things and had a lot of the same interests. 2 weddings, 1 move to Alberta and 5 kids later we are as close as we have ever been. Laura is one of those amazing people who can overcome anything and I've learned so much from her and depended on her so many times over the years.

When her second little guy was born, he was fighting for his life. .Within weeks of Noah's birth he was diagnosed with CHARGE Syndrome. Noah has many challenges that make his growth and development more difficult but seeing this little warrior overcome the smallest of obstacles brings overwhelming joy and happiness. He is one of the strongest, happies,  stubborn and determined little guys I've ever known. He is just as amazing as his momma.

Noah was born with bilateral optic nerve colobomas, severe to moderate hearing loss, unilateral facial palsy, cranial nerve malformation, laryngomalacia, a critical airway, small semi-circular canals (which affects balance), sleep apnea, a heart and a bladder defect, and he is fed by a gtube. These are just some of Noah's diagnoses. 

(It pains me that they dress these poor children in the blue and white...
black and gold would be so much cooler! lol)

As you might imagine hearing this news as parents was devastating. It felt like all the hopes and dreams that they had for their beautiful boy were slowly being removed with every doctor visit and hospital stay.  Over time these setbacks became just that, setbacks. It was a very difficult time but Laura and John met the challenges head on and  are doing everything they can to make life "normal" and exceptional for their little guy.

Laura and John have been very active in the CHARGE community and are planning to attend a conference in the spring to help them learn more and help Noah reach his full potential.

Just last month, Laura lost her mother and the unexpected trip home to say goodbye to a beloved mother and grandmother has put a dent in the funds they had set aside to attend the conference. They are really hoping to get the whole family to the conference but it might just not be possible to get us all there without some support.

Christmas is a time for giving. They have given so much to me and to so many others and I want to help them get to the conference. I'm hoping that a few of you will want to help too. Please visit their gofundme page and make a donation. I know how much it will mean to them.

No comments:

Post a Comment

CopyRight © | Theme Designed By Hello Manhattan