Jessica Larkin

New England | MuSK-eteers

Hi friends!! Thank you for visiting my MG Walk fundraising page!

As most of you know, my name is Jess and I am 26 years old. I am a pediatric nurse, an avid skier, and a certifiably crazy dog lady. I also have Myasthenia Gravis.

Below, is my story... (I realize its lengthy, so for those of you who would like to bypass the details - you can do so by skipping to the last paragraph)

Besides being a mouthful, Myasthenia Gravis is a chronic and rare autoimmune neuromuscular disorder for which there is currently no cure. Myasthenia affects the voluntary muscles in my face, arms, and sometimes involves my respiratory muscles. I often have trouble chewing, swallowing, speaking, smiling; experience significant arm weakness; and persistent double vision with droopy eyelids during my exacerbations that last days to weeks.  

I was diagnosed with Myasthenia in October 2015. Shortly after it was determined that I have, what they call, "MuSK Positive" MG.  This means I have an antibody that does not respond to traditional MG treatments making it difficult to prevent or control symptoms and also puts me at higher risk of respiratory crisis.  Only 4-8% of Myasthenia patients are MuSK Positive.  

Over the last 18 months my neurology team struggled to keep my exacerbations under control. As a result I've had over 40 Plasma Exchange treatments in addition to long term steroid doses, and immunosuppressive medications.  Typically, I could not go longer than 7 days without Plasma Exchange despite countless attempts to space out treatments.

Below, you will see a photo of myself and my godson at his christening. Looking at that picture (..once you get beyond the muffin-of-love that is my godson) you can probably notice my drooping eyelids and weak smile. What you can't see is my severe and unrelenting double vision or that I am struggling to hold him for the picture because of the fatigue in my arms.

I did my best to be as stoic as possible but there were times that I could not ignore symptoms, especially when they had the potential to negatively affect care of my patients. Subsequently, I missed a significant amount of work during flares (for those of you who know me, you can imagine how much this ate away at me).  I would be lying if I said that months of repeatedly succumbing to this disease did not take a profound toll on me.

With all that being said - I have MG but MG does not have me.  Ultimately I decided that I will not be the victim of Myasthenia. MG may slow me down at times but it will not stop me from living my life the way I want to.  Today, thanks to a drug called Rituxan, I have been symptom free for almost 4 weeks!!  Although we are unsure how long this remission phase will last (..hopefully a few months!), I am grateful for every day that I wake up and I can see straight, smile, and speak clearly.  It's important to remember that not all MG patients are this lucky though.

Please join my team or make a pledge to help us support research that will provide resources to better the lives of MG patients (like me!), and most importantly to find a cure! Together we can make a difference!!

With appreciation and love,

Jess Larkin :)



Raised: $8,130
Goal: $5,000
100 percent raised

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Rank:  
#9  National 
#1  Local

Thank you donors
Sandra Larkin
Anonymous
Anonymous
Good luck Jessica
Timothy Hathaway : $500
"Together we can make a difference!!", You said it! Love to you, Sandee, Rachel, Ethan, Liz & Tim
Anonymous : $500
We are with you .Go Jess
Ethan Hathaway : $500
Eric Gantwerker
Angela Roberto
"Throw me to the wolves and I will return leading the pack." Keep up the fight, fundraising and awareness - you're doing wonderful work. - Tony and Angela Roberto
John Candon : $200
Good Luck from the Candon's.
Francis Macisaac : $200
Adam Hayes : $200
Enjoy the walk??Marlo and adam??
WILLIAM ENGEL : $150
Good Luck Jessica
Brad and Kristin Cady : $150
Brianna Benjamin : $100
Christopher Pineau : $100
Show them who the top walker is in the family Jess. Good luck! Chris & Donna
Susan Shaffer : $100
Keep up the fight Jess!
Karlene Valente : $100
Michael & Donna Wahlberg : $100
Eileen Earley : $100
Proud to walk with you Jess! with love Eileen, Craig and Jay
Kristin Mead
??
Gerry Theriault : $100
Catherine Manganello
I'm so very proud of you Jess ??
Charles Larkin : $100
Good Luck Jessica
Robert O'Connell : $100
Take your Dad he needs a walk! Have fun Robert and Sharon.
David Sommers : $100
Ann Larkin : $100
Jess, So proud of you! Good Luck on Sat. Love& Hugs Nana
Dru Gillespie : $100
If love to walk with the team??
Kathy Beech : $100
Good Luck Jessica!
Lindsey Hildenbrandt : $100
You got this Jess! We love you! ~Lindsey and Sean
Jillian MacIsaac : $100
We love you Jessie!!! You got this. Admire your grit and positive attitude. Xo Jill and Dan
Charlene Cesarini : $50
Wishing you all the best.
Graham Morrison : $50
elliott russell : $50
go Jess, so glad u are back and doing so well
Meghan Hoffmann : $50
Love you, Jess!! Dave, Charlie, and I are all cheering you on!!!!
Anonymous : $50
Thumbs up to you, Jess
Ryan Doherty : $50
Tracey Sommers
We love you Jess!!! love, Hailey & Joey <3 can't wait for the walk!
sheila troy : $50
Roxanne Lydon : $50
Shawn Neenan : $50
Carla Moriarty : $50
I'm so proud of you Jess????
Jen Federico : $50
Best of luck Jess!! ??
Mary Stille : $50
Wish I could have been there good luck! <3
DAVID ARCHIBALD : $50
Suzanna Zaganjori : $50
Paula Maier : $50
Jes, Shoot for the moon. Wishing you 1000 times more than 3 months remission. Miracles happen every day ?. Best to you, Butch and Paula Maier (Greg and Tim's cousin)
Anonymous : $50
Good luck Jess!
Marcellus Lee : $50
Emily Milone : $50
We're all here to support you, can't wait for the walk!
Alexandra Johnson
?? You tons!
Annie O'Mahony
SO PROUD OF YOU JESS!!!! You are an inspiration! Have fun on Saturday!
Rene DiPietro : $30
You're amazing <3 <3 Love you!
Matthew Martin : $30
Ann Marie Glynn : $25
Kristin Bruyette : $25
Proud of YOU!!!!
Sally Cherner : $25
So glad you're doing well now!!!
Dorothy Philbrick
Have a fun time. Love you, Dorothy
MuSK-eteers
Jessica Larkin - $8130 raised
Alicia Maccarrone - $75 raised
Annmarie MacIsaac - $0 raised
Caite Cutler - $0 raised
Daniel MacIsaac - $0 raised
Dave Larkin - $0 raised
David Sommers - $0 raised
Dennis Martin - $0 raised
Donna Wahlberg - $0 raised
Dru Gillespie - $0 raised
Eileen Earley - $125 raised
Emily Milone - $0 raised
Graham Morrison - $0 raised
Gregory Sommers - $0 raised
Jaye Dernier - $0 raised
Jennifer Jones - $0 raised
Jennifer Fix - $100 raised
Jessica Baxter - $0 raised
Kalley Neenan - $0 raised
Katie Irwin - $0 raised
Kenneth MacIsaac - $0 raised
Krista Sommers - $0 raised
Lauryn MacIsaac - $0 raised
Lori Dernier - $0 raised
Marcellus Lee - $0 raised
Marlene Sommers - $0 raised
Matthew Martin - $0 raised
Nick Mullaney - $0 raised
Rose Maccarrone - $75 raised
Sandra Larkin - $60 raised
Shawn Neenan - $0 raised
Sheila Troy - $0 raised
Teresa MacIsaac - $0 raised
Thomas MacIsaac - $0 raised
Victoria Cesanini - $10 raised

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