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Nick's Story: A typical story of "wants" and "needs"

There are many Nick stories to be told over the next few months in our blog, but this particular story involves the critical need of this resilient, upbeat guy who always has a smile on his face and a "can-do" attitude: our inspirational boy needs a life-saving kidney transplant.

Now don't get us wrong. Nick has the same "wants" as other kids. And yet, he has needs that most others don't.

AGE 4: No, you don't need those M&Ms, you want those M&Ms. (Though the M&Ms would come eventually, Nick needed his first procedure to assess his kidney function).

AGE 8: No, you don't need a new bike, you want a new bike. (Though a bike would come eventually, Nick needed his first appointment with a neuromuscular specialist at Children's who diagnosed his mitochondrial myopathy, indicating an underlying mitochondrial disorder which impacts multiple systems including neurological, cardiac, renal, gastrointestinal, ophthalmological, muscular...)

AGE 13: No, you don't need a new Xbox, you want a new Xbox. (Though an old-school Xbox would show up eventually, needed a cardiac catheterization to repair dangerous "extra" electrical pathways followed by surgical placement of an ICD--an implanted cardiac defibrillator/pacemaker for his hypertrophic cardiomyopathy.)

AGE 16: No, you don't need an iPhone, you want an iPhone. (Though Nick finally got his iPhone for high school graduation, at 16, Nick needed a g-tube to help sustain his life as kidney disease had taken his appetite and left our "growing" son with "failure to thrive" syndrome as a teen!)

AGE 19: No, you don't need a kidney, ...wait... You do actually.

Like other parents, we never thought our son's life would be determined by his life-long medical needs.  And, even as his disease progresses, we are so proud to say that he hasn't lost his passion: sports.

Nick loves his Boston sports teams: Bruins, Celtics, Patriots, and, of course, Red Sox! And his passion certainly makes the trips to Boston for appointments more, well, interesting, as he banters with his doctors at Boston Children's Hospital. 

He also loves his college teams and is especially proud to be the team "manager" of the Salem State Vikings Baseball team and a part of the summer college team of the North Shore Navigators of Lynn. 

But his illness has deprived him most recently of what he "wants" to do most, actually playing his beloved sports. Once a member of Danvers Challenger Baseball, Peabody Challenger Basketball, Blazing Bears Soccer, and Cape Ann Lacrosse, Nick has had these activities taken away from him as his kidneys have continued to fail.

Because traditional dialysis (hemodialysis) is too dangerous for Nick given his heart disease, he must undergo peritoneal dialysis as we wait to find a donor. This type of dialysis required yet another surgery, yet another implanted support.  This type of dialysis has the benefit of being done "at home". But the benefit stops there as this type of dialysis needs to be done 7 days a week, 365 days a year, requiring Nick to be attached to a dialyzer (machine) in his "sterile" bedroom for 10-12 hours a day.

Every. Day.

Yes, we are grateful for this life preserving treatment. However, dialysis is NOT a cure. It is a significant, life-altering stop-gap.  It will NOT change the fact that Nick's best chance at the life he WANTS, one full of internships and school, one full of youth group and dances, one full of sports--participating, coaching and PLAYING--can't happen without a kidney transplant.   

AGE 20: Yes, Nick, you do need a kidney. 

Can you help us close this story with: "though he had to wait for his "champion", he got the best gift ever, the one he needed the most--the gift of life."

Many blessings to you all.

 

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