Michael: The Voice of a Warrior

Dear friend,

When you look into the eyes of a child that suffers with a Genetic Disorder, Neurofibromatosis (NF) you may see a happy child or you may see a child in pain. NF presents differently in each case and is an unforgiving disorder that leads a life of physical and emotional pain with many health complications.  There is no cure for NF.

Neurofibromatosis (NF) is caused by a genetic mutation in a gene.  This gene is responsible for producing a protein that helps regulate growth of nerve tissue.  The protein effectively "switches off" the growth of tissue.  This leads to multiple areas of uncontrolled growth (tumors) developing in the nervous system.  It affects 1 in 3,000 births and is inherited or a sporadic mutation.  Complications and severity can vary with each individual such as; skin "spots" (cafe au lait spots), neurofibromas (bumps on or under the skin), learning and behavioural problems, optic nerve tumors (glioma), high blood pressure, seizures, bone deformities (scoliosis, pseudarthrosis, over growth), brain tumors, cancer and plexiform neurofibromas (painful neurofibromas that grow inside branches of nerves and spread into nearby tissues and bone).

Michael and his two brothers were diagnosed with NF when they were infants.  All three children have different complications from NF, however, Michael's complications are much greater.   Michael suffers with a plexiform neurofibroma that developed on his lower back and has spread into is lower left extremity.  From the time he was crawling, his left leg was larger and slightly longer then the right, not to mention painful.  Michael showed such courage and strength as a toddler as his leg progressively deteriorated.  Walking has always been difficult as he would often trip and fall due to low muscle tone and strength. Slowly, Michael's leg began to show signs of bone deformity causing his mobility to degrade even further. A warrior at heart, Michael persevered to just be a kid and have fun. He would simply pick himself up, dry his tears and keep pushing forward. Michael's courage is truly inspirational.

By the age of two, Michael required a shoe lift on his right shoe to assist with the increasing leg length discrepancy. In addition, Michael began wearing a full leg brace on his left leg to help cope with the progressing bone deformity, pain, difficulty with mobility and overall daily functions.  In the subsequent years, our family's days were filled with heartache and pain as we watched Michael struggle to adapt to his "new" way of life filled with pain and discomfort, adjustment to support aids, many physiotherapy sessions and the emotional struggles resulting from his peers asking him questions. 

In 2012, Michael had his first surgery to attempt to realign his left leg closer to a normal position this helped to decrease some pain and take some stress off of his knee.   Meanwhile, the tumor has continued to grow at a rapid rate causing hypersensitivity to temperature in his lower extremities, difficulty with bladder control and forced the leg length to increase.   By 2013, Michael's leg length discrepancy was 15cm longer then his right leg, further aggravating his mobility, even with adjustments to his brace and shoe lift support, a wheelchair was finally approved for Michael so that he may continue to participate in day trips and long distance outings.  Michael went back to surgery in the fall to have approximately 4cm of his femur removed in an attempt to shorten his leg thereby increasing his mobility. 

As there is no cure for NF, treatments are aimed at the side effects caused to the body.  Cosmetic surgery can be done on neurofibromas but plexiform neurofibromas are very complicated and usually remain untouched.

The past few years, our family has searched for other treatment options and finally, in 2013, we located a specialist in the United States that has been involved with complex cases of neurofibromatosis.  Our   family has met with the specialist and has accepted Michael`s case. The surgery aims to partially remove the tumor and slow its growth. Although with risks, this surgery offers much hope. An application was submitted to OHIP requesting Out of Country Coverage for the surgery but unfortunately our government has denied the application.

Our family is putting together a Fundraising Campaign in support of Michael to raise the funds necessary to have the surgery in the states.  The events being organized over the next few months include a Concert, Golf Tournament, Casino Night, and Fitness Events.  Disbursement of funds raised will go towards cost of surgery, travel & accomadations, miscellaneous medical expenses and continued medical care following the surgery. 

Your support for our family is greatly appreciated. We are committed to improving Michael's health and providing him with a fighting chance against this painful disorder that knows no boundaries.     

Thank you for your support.
Michael & Family
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