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

DONATE NOW

Share This Page


Rank:  
#7  National 
#1  Local

Thank you donors
Sandra Larkin
Anonymous
Anonymous : $500
We are with you .Go Jess
Ethan Hathaway : $500
Timothy Hathaway : $500
"Together we can make a difference!!", You said it! Love to you, Sandee, Rachel, Ethan, Liz & Tim
Anonymous
Good luck Jessica
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
Robert O'Connell : $100
Take your Dad he needs a walk! Have fun Robert and Sharon.
Lindsey Hildenbrandt : $100
You got this Jess! We love you! ~Lindsey and Sean
Michael & Donna Wahlberg : $100
Jillian MacIsaac : $100
We love you Jessie!!! You got this. Admire your grit and positive attitude. Xo Jill and Dan
David Sommers : $100
Dru Gillespie : $100
If love to walk with the team??
Kathy Beech : $100
Good Luck Jessica!
Kristin Mead
??
Ann Larkin : $100
Jess, So proud of you! Good Luck on Sat. Love& Hugs Nana
Gerry Theriault : $100
Charles Larkin : $100
Good Luck Jessica
Catherine Manganello
I'm so very proud of you Jess ??
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
Eileen Earley : $100
Proud to walk with you Jess! with love Eileen, Craig and Jay
Ryan Doherty : $50
Suzanna Zaganjori : $50
Marcellus Lee : $50
DAVID ARCHIBALD : $50
Roxanne Lydon : $50
Shawn Neenan : $50
Carla Moriarty : $50
I'm so proud of you Jess????
Graham Morrison : $50
elliott russell : $50
go Jess, so glad u are back and doing so well
Tracey Sommers
We love you Jess!!! love, Hailey & Joey <3 can't wait for the walk!
sheila troy : $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)
Jen Federico : $50
Best of luck Jess!! ??
Meghan Hoffmann : $50
Love you, Jess!! Dave, Charlie, and I are all cheering you on!!!!
Anonymous : $50
Thumbs up to you, Jess
Charlene Cesarini : $50
Wishing you all the best.
Emily Milone : $50
We're all here to support you, can't wait for the walk!
Mary Stille : $50
Wish I could have been there good luck! <3
Anonymous : $50
Good luck Jess!
Alexandra Johnson
?? You tons!
Annie O'Mahony
SO PROUD OF YOU JESS!!!! You are an inspiration! Have fun on Saturday!
Matthew Martin : $30
Rene DiPietro : $30
You're amazing <3 <3 Love you!
Kristin Bruyette : $25
Proud of YOU!!!!
Dorothy Philbrick
Have a fun time. Love you, Dorothy
Sally Cherner : $25
So glad you're doing well now!!!
Ann Marie Glynn : $25
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

Join this team