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Our Story

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.



  • Tim Parker

    Best wishes to Nick from Tim and Janet Parker

  • Bonnie Howard

    Thinking of you and wishing you the best - Bonnie Howard

  • Rick Lofgren, COTA President

    Greetings from COTA! I want to congratulate the COTA for Team Nick J volunteer team for an outstanding job raising funds for the campaign in honor of Nick! When I set the campaign fundraising goals with all of our families, I try to do so knowing that some communities and volunteer teams have more developed resources and connections than others, and in fundraising these are critical to success. With this in mind, I usually suggest a goal to COTA patients that I believe is needed for any patient’s long-term expenses and transplant-related costs, and the goal generally reflects the next four to five years of out-of-pocket costs. For example, most of our patients will have $5,000 in annual co-payments, deductibles, and medications, as well as $7,500 or more of additional costs for clinic visits. This could mean $25,000 - $30,000 for these costs alone for any patient in two years after transplant. In this case, because your team and supporters have done such a great job, and with Nick’s ongoing care as he prepares for his transplant this month, I spoke with Jodi this week and suggested that we raise the goal to better reflect what I believe is the true long-term expense that a patient will incur given age, insurance and other factors for someone going through his situation in the coming months and years. Because of this, I have raised the goal for the COTA for Team Nick J campaign group from $75,000 to $150,000 to reflect what I believe will be actual costs going forward. Please know there are many factors in this and that I bear the responsibility of justifying this to anyone who asks, and am happy to do this as I believe that it is the right thing to do. I want to convey that this is not a request for everyone to go out and do more than previously planned, but simply a reflection of realistic long-term costs. Thank you for all the work and support you have provided to this point, and please keep Nick, his kidney donor and his family in your prayers as he continues along his transplant journey!

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