Jamie’s Fight !

Hello everyone and thank you for visiting this Go Fund Me page.  Today I write to you on behalf of a family in our community and an 8 year old boy named Jamie who would greatly benefit from your support.  This topic is close to our hearts and is very close to home, as Jamie is also my daughter’s best friend.  We have vowed as a family and as members of our community to do whatever it takes to help and support our closest friends.  For those of you who do not know Jamie and have never heard of Duchenne Muscular Dystrophy (DMD), please, read Jamie’s story:

As most parents can understand, it is very difficult to diagnose a new-born baby, especially when a baby is born colic.  This was the case for Jamie, he cried and screamed for well over a year, for what seemed to be no apparent reason.  No amount of consoling seemed to bring him any relief.  As Jamie grew older, we started to notice some behavioral issues.
               When he is at his best we know him to be a kind, curious and silly soul.  Playing and spending time with his big sister, Emily, laughing and being silly outside, happy and loving.  He is a great kid, a compassionate brother and true friend.  However, there was another side to Jamie.  He had a tendency to lash out, often, and turn in to moods of misery and anger.  It seemed even the smallest things would set him off.  Jamie continued to exhibit this behavior until he was old enough to enter junior kindergarten.
               Jamie’s parents were terrified to send him to school for JK and were unsure if he was ready to enter the school environment.  After being convinced that structure, routine and supervised socialization may be good for him, Jamie began his first year of school.

               School proved to be a very difficult task and was truly the beginning of understanding Jamie’s curious mind.  He struggled to socialize with other children, share toys, listen to his teacher and would have complete melt-downs.  Jamie’s parents were always on-call and could never venture too far away him.  Needless to say, Jamie’s first year in school did not go well.  Jamie’s behavioral struggles were displaying more than ever.  Jamie was soon referred to a pediatrician and psychologist and after months of extensive testing he was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD), Oppositional Defiant Disorder (ODD) and Intermittent Explosive Disorder (IED).  Jamie was completely unable to control his emotions and showed explosive outbursts of anger and violence, he was soon assigned a social worker to help him at school and home with calming strategies.  Between the social worker meetings and medication, we started to see positive progress in Jamie’s behavior and were inclined to believe that this strategy was working and benefitting him.

Two summers ago, Jamie showed interest in learning to ride a bike and by the end of that summer had taught himself to ride.  Last summer, Jamie had lost interest and we began to notice that he was choosing activities that did not require physical effort.  He began to struggle standing up from a seated position, he would take stairs very slowly and started to fall frequently with no obstacles in his way.  We also noticed he would always walk on his toes with his belly pushed out.  Jamie was soon referred to the neuromuscular clinic at McMaster’s Children Hospital, after 3 months of testing Jamie was diagnosed with Duchenne Muscular Dystrophy (DMD).  Jamie shows every symptom which includes the young behavioral issues.

DMD is a genetic disorder characterized by progressive muscle degeneration and weakness.  It is caused by an absence of dystrophin, a protein that helps keep your muscle cells intact.  The disease primarily affects boys and usually begins to show in ages 3 – 5.  By early teens, the heart and respiratory muscles become affected.  Historically, life expectancy for someone with DMD is not far beyond their teen years.  However, due to advances in cardiac and respiratory care, life expectancy is increasing and survival into the early 30’s is becoming more common. 

Since Jamie’s diagnosis of DMD we have watched this disorder drastically change his life at a pace we did not expect.  Jamie now permanently walks on his tip-toes and can barely navigate stairs.  We expect him to be in a wheel chair full-time within 2 years.  Jamie and his family will continue to face many challenges down the road.  He will need to be cared for 24/7 and without the necessary equipment such as wheelchairs and chairlifts he will become immobile without assistance.

As a community, friends and family, we can help make a difference in Jamie’s life by making him as comfortable and mobile as possible.  My goal for Jamie is to raise $50,000.  Jamie’s home needs an extensive renovation so that he is able to have a customized bathroom and bedroom on the main floor of his house, creating an adaptive environment for him will be the most important step.   We will need to install a ramp for easy accessibility into his home. Jamie will need a motorized wheelchair and a scooter.  His house will need to be equipped with chairlifts and transfer lifts.  His family will need an accessible mode of transportation, this will include a wheelchair accessible vehicle as Jamie will require regular heart check-ups.   In order to help prolong his young, precious life, Jamie will need physical therapy and will need to follow a strict dieting plan.  As a working class family it is nearly impossible to find the sort of money required to support him.   It has already been a challenge for his family not being able to travel too far from him and this level of attention is only going to increase as his disorder progresses.    

               Among all the challenges with Jamie’s life to date and the heartbreaking news of this diagnosis, we can finally understand him.  What he has been feeling, why he struggles with his emotions and his communication.  Everything makes sense.  Most importantly, the true message of this post, is that he is loved, so much and by so many and we will do whatever it takes to support him and create the best possible life.    Funds are urgent as the home extension is scheduled to start this spring and medical equipment is required as soon as possible and has become a critical necessity.

Please help us by donating towards Jamie’s cause and support his fight against DMD.  We need as many people to share this page across all networks.    We thank you from the bottom of our hearts for your gracious help and support and for taking the time to hear and share our story.

 

For more information about DMD please visit: https://www.mda.org/disease/duchenne-muscular-dystrophy

Donations

  • Anonymous 
    • $200 
    • 12 mos
  • Anonymous 
    • $50 
    • 16 mos
  • Andrew Kyle 
    • $200 
    • 17 mos
  • dina konduros 
    • $200 
    • 18 mos
  • Mildred Packer 
    • $200 
    • 20 mos
See all

Organizer and beneficiary

Dallas Lee 
Organizer
Cambridge, ON
Kelly Jackson 
Beneficiary
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