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Alexa Winakor's Fundraiser:

A Lasting Mark Foundation for Linear Scleroderma

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Alexa Winakor

THE STORY:

Linear Scleroderma is a rare autoimmune disease that affects children.  It is characterized  by hardening of the skin on the face or localized to a single extremi ty of the body.  In more severe cases unilateral extremities can be affected.  The disease can also invade the muscle and bone. Because ofthis it can interfere with normal growth and development.  When joints are involved it can impair mobility. It can cause minor to major disfigurement. Currently there is no cure for Linear Scleroderma. The treatment includes immunosuppressive therapies and steroids. They do not cure the disease but hope to limit its progression and greater involvement. Unfortunatel y these treatments come with their own host of side effects.  It takes years for the,treatment modalities to show any cessation of symptoms.

 

Luke was diagnosed with Linear Scleroderma at the age of 1 3.  For months we were treating what we thought was a broken finger that had healed improperly. His disease has presented in his right upper extremity. Now all of his fingers, his wrist and his el bow have shown decreased mobility and function. In addition he has discoloration and hardening of the skin in his lower and upper arm. This discoloration is a permanent mark to remind Luke ofhis diagnosis.

 

Being diagnosed with a chronic disease has been life changing to Luke and our family. We have incorporated daily excersises  and medications, weekly injections, weekly labwork and occupational therapy twice a week to our busy li ves. We have had a tremendous amount of support along the way in helping us to adjust to the changes in our lives. Family, friends, teachers, therapists, and doctors have all helped us on this journey. We have come to a place of acceptance and gratitude that Luke's disease is not in fact worse.  For many with Linear Scleroderma  it is much worse. Luke and I would like to turn his diagnosis of this disease into something posi ti ve and make a difference in the li ves of children who are not as fortunate as Luke. Luke wants to leave a Lasting Mark on others.

 

Luke has had the good fortune to have doctors at the Hospital for Special Surgery in Manhattan treating his disease.  The hospital 's research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Dr. Thomas Lehman, Luke's doctor, is the Linear Scleroderma guru of the world. He is looking for funding to help support research in finding improved treatments and someday a cure for this childhood disease. We would like to help raise monies to support a grant for this research.  When diseases are this rare it is difficult to raise monies to support their research. This is why we are sharing our story.

 

We are trul y blessed and cannot thank you enough for your wi llingness to help Luke feel empowered. We want to turn this into a rewarding and healing experience for him while making a difference in the lives of others.

The Team: $0 TOTAL RAISED SO FAR

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Alexa Winakor

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