Colby's Crusade
Spende geschützt
My name is Gloria Audette (Boldt) and I am the mother of a wonderful and loving son, Colby. I grew up in Eganville, Ontario and my husband grew up in Pembroke, Ontario. We both now live in Pembroke.
When Colby was born, I could not have been any more happier than I was at that moment. I was truly blessed with a perfectly healthy little boy.
On March 3, 2011 our lives changed forever.
This was the day that we were told that our little boy (Colby was 7 at the time) was going to not only lose his mobility, but that he would most likely not live past his mid-twenties. They told us that Colby had "Duchenne Muscular Dystrophy".
Duchene muscular dystrophy is an x-linked genetic disorder that affects mostly boys. In Duchenne, boys begin to show signs of muscle weakness as early as two to five years of age. The disease gradually weakens the skeletal or voluntary muscles in the arms, legs and trunk. Due to progressive muscle weakness, Duchenne patients are often wheelchair bound between the ages of seven and 13 years old. At a later stage, the boys' respiratory and cardiac muscles are also affected and for most boys, respiratory and cardiac failure are major causes of death, often prevalent by the age of 20.
I can remember sobbing and putting out my arm, saying "can you not take from me what Colby needs?" They said, "NO".
I then asked them if there is a pill or something that we could give him to help? They said "NO". They told us there is NO CURE for DMD.
This was the second time that I had ever seen Pat cry so hard. The first time was when we lost our little Nathaniel 1 year before Colby was born. Colby is our only child.
The doctors told us that the only treatment was a steriod called "deflazacort", which statistically allows boys to walk an additional 2 years. But like any drug, there are always side effects.
Having to make a decision within one month as to whether we wanted Colby to take the steriod, and still being in shock over Colby's diagnosis, we decided to give Colby the steriod with the hopes that something better would come along.
Shortly after receiving the medication which is dispensed from CHEO, we found out that it is not covered by OHIP and that we would have to pay for this drug out-of-pocket.
Now instead of planning to enrol Colby in the next season of soccer, we were thinking of how we could tell Colby that he could no longer play soccer, which he absolutely loved to play. He was very upset and angry.
Since Colby's diagnosis five (5) years ago, he is no longer able to climb stairs, go on a regular school bus like the rest of his friends or even walk to school, he is no longer able to shower himself, participate in gym, or go to his friend's houses because he is not able to climb the stairs into their homes, he can no longer run and play tag with his friends because his muscles won’t allow him to.
The other day when we were shopping for shoes for Colby for school, I saw this mother race with her little girl who was around 7 years old. I hear my co-workers and friends talk about their sons and/or daughters playing soccer, hockey or some sort of sport.
My heart aches for Colby as he is not able to play any sports or even run. As a matter of fact, we expect that Colby will lose his mobility to walk by Christmas.
Imagine at the age of 13 years old your teenager says he or she wants to go in the water at a lake. Here you are lifting your teenager in and out of the water and standing holding his hand for balance so he does not fall. Then I think of what Colby must think. His mother is lifting him in and out of the water in front of many other teenagers and looking at him.......
We as Colby's parents have decided not to tell Colby his full diagnosis yet as we do not want him to give up HOPE. Even though, in my heart, I think Colby is starting to figure out that he is not going to get better. We are dreading the day where we have to sit down and talk with Colby about his full diagnosis.
This is a picture of my dad holding Colby. Later in 2011 after Colby was diagnosed, I lost my dad very suddenly to leukemia at the age of 66. My mom was placed into a nursing home after my father's passing as she was diagnosed with dimensia.
A lot of people know that in May, 2002 we began a fundraiser called "Colby's Crusade" to raise awareness about Duchenne Muscular Dystrophy and monies to help pay for Colby's ongoing medical expenses, such as several trips a year to CHEO, meals, gas, medication, etc.
Last year we re-mortgaged our home to put an addition onto our existing home which included an elevator for Colby and accessible bathroom. At this time, we applied all the monies we had raised since Colby's Crusade begain in 2002 towards the addition.
Due to Colby's progression, we were advised by CHEO doctors to get Colby a power wheel chair in order that he can maintain his independence. At first Colby wanted nothing to do with a power chair and after convincing him to try the trial chair we had at home, he would go up and down the driveway faster and faster. Even though it is difficult seeing your son in a power chair, you have to be happy for him so that he will want to use it more.
Unfortunately, we do not have an accessible vehicle to go places with Colby.
With no government funding and no equity left in our home, we are asking for help. To date, we have received close to $13,000.00 from 2016 Colby's Crusade fundraiser and donations through GoFundMe. We have placed these monies in a trust account set up at our local TD Bank in Pembroke, Ontario.
If you were told by your family doctor that you only have so long to live, what would you do?
We wish that we could spend each waking moment with Colby and give him whatever he wants. But the reality is that we need to continue working fulltime in order to pay for the home addition, Colby's medical expenses, etc. and now the accessible van with ramp.
We are very proud people and asking for help is difficult, but we are not asking for ourselves, we are asking for COLBY.
If you are able to make a donation, we would like to thank you in advance for any amount that you are able to contribute. Thank you from the bottom of our hearts!!!!!
Pat and Gloria Audette
When Colby was born, I could not have been any more happier than I was at that moment. I was truly blessed with a perfectly healthy little boy.
On March 3, 2011 our lives changed forever.
This was the day that we were told that our little boy (Colby was 7 at the time) was going to not only lose his mobility, but that he would most likely not live past his mid-twenties. They told us that Colby had "Duchenne Muscular Dystrophy". Duchene muscular dystrophy is an x-linked genetic disorder that affects mostly boys. In Duchenne, boys begin to show signs of muscle weakness as early as two to five years of age. The disease gradually weakens the skeletal or voluntary muscles in the arms, legs and trunk. Due to progressive muscle weakness, Duchenne patients are often wheelchair bound between the ages of seven and 13 years old. At a later stage, the boys' respiratory and cardiac muscles are also affected and for most boys, respiratory and cardiac failure are major causes of death, often prevalent by the age of 20.
I can remember sobbing and putting out my arm, saying "can you not take from me what Colby needs?" They said, "NO".
I then asked them if there is a pill or something that we could give him to help? They said "NO". They told us there is NO CURE for DMD.
This was the second time that I had ever seen Pat cry so hard. The first time was when we lost our little Nathaniel 1 year before Colby was born. Colby is our only child.
The doctors told us that the only treatment was a steriod called "deflazacort", which statistically allows boys to walk an additional 2 years. But like any drug, there are always side effects.
Having to make a decision within one month as to whether we wanted Colby to take the steriod, and still being in shock over Colby's diagnosis, we decided to give Colby the steriod with the hopes that something better would come along.
Shortly after receiving the medication which is dispensed from CHEO, we found out that it is not covered by OHIP and that we would have to pay for this drug out-of-pocket.
Now instead of planning to enrol Colby in the next season of soccer, we were thinking of how we could tell Colby that he could no longer play soccer, which he absolutely loved to play. He was very upset and angry.
Since Colby's diagnosis five (5) years ago, he is no longer able to climb stairs, go on a regular school bus like the rest of his friends or even walk to school, he is no longer able to shower himself, participate in gym, or go to his friend's houses because he is not able to climb the stairs into their homes, he can no longer run and play tag with his friends because his muscles won’t allow him to.
The other day when we were shopping for shoes for Colby for school, I saw this mother race with her little girl who was around 7 years old. I hear my co-workers and friends talk about their sons and/or daughters playing soccer, hockey or some sort of sport.
My heart aches for Colby as he is not able to play any sports or even run. As a matter of fact, we expect that Colby will lose his mobility to walk by Christmas.
Imagine at the age of 13 years old your teenager says he or she wants to go in the water at a lake. Here you are lifting your teenager in and out of the water and standing holding his hand for balance so he does not fall. Then I think of what Colby must think. His mother is lifting him in and out of the water in front of many other teenagers and looking at him.......
We as Colby's parents have decided not to tell Colby his full diagnosis yet as we do not want him to give up HOPE. Even though, in my heart, I think Colby is starting to figure out that he is not going to get better. We are dreading the day where we have to sit down and talk with Colby about his full diagnosis.
This is a picture of my dad holding Colby. Later in 2011 after Colby was diagnosed, I lost my dad very suddenly to leukemia at the age of 66. My mom was placed into a nursing home after my father's passing as she was diagnosed with dimensia.
A lot of people know that in May, 2002 we began a fundraiser called "Colby's Crusade" to raise awareness about Duchenne Muscular Dystrophy and monies to help pay for Colby's ongoing medical expenses, such as several trips a year to CHEO, meals, gas, medication, etc.
Last year we re-mortgaged our home to put an addition onto our existing home which included an elevator for Colby and accessible bathroom. At this time, we applied all the monies we had raised since Colby's Crusade begain in 2002 towards the addition.
Due to Colby's progression, we were advised by CHEO doctors to get Colby a power wheel chair in order that he can maintain his independence. At first Colby wanted nothing to do with a power chair and after convincing him to try the trial chair we had at home, he would go up and down the driveway faster and faster. Even though it is difficult seeing your son in a power chair, you have to be happy for him so that he will want to use it more.
Unfortunately, we do not have an accessible vehicle to go places with Colby.
With no government funding and no equity left in our home, we are asking for help. To date, we have received close to $13,000.00 from 2016 Colby's Crusade fundraiser and donations through GoFundMe. We have placed these monies in a trust account set up at our local TD Bank in Pembroke, Ontario.
If you were told by your family doctor that you only have so long to live, what would you do?
We wish that we could spend each waking moment with Colby and give him whatever he wants. But the reality is that we need to continue working fulltime in order to pay for the home addition, Colby's medical expenses, etc. and now the accessible van with ramp.
We are very proud people and asking for help is difficult, but we are not asking for ourselves, we are asking for COLBY.
If you are able to make a donation, we would like to thank you in advance for any amount that you are able to contribute. Thank you from the bottom of our hearts!!!!!
Pat and Gloria Audette
Organisator
Gloria Boldt Pat Audette
Organisator
Pembroke, ON
