Van for Cayden
Donation protected
Cayden was born on February 15, 2013. He was delivered by emergency caesarean section then immediately rushed to the neonatal intensive care unit to be placed on a ventilator, monitors and IVs. He was given caffeine to prevent his heart from spontaneously stopping. We spent 26 days in the NICU and were finally released to go home on March 13.
On April 4, we took Cayden to see a genetics doctor in Winnipeg. We received a suspected diagnosis of Myotonic Dystrophy which was later confirmed on August 7 (which was coincidentally was our 9th wedding anniversary). Congenital Myotonic Dystrophy occurs when a protein on one of his genes in his DNA repeats itself. Five to thirty-seven repeats is normal, however, Cayden has 1500 repeats which is why he is so severely affected by it. This disease affects every system in his body to some extent. He also has significant developmental delays and is unable to crawl, stand, walk or talk.
We started this page to raise funds for our family to purchase a new van. Cayden weighs well over 35 pounds and is a very tall boy with long legs. Lifting him into and out of his car seat is a constant struggle. I have started having to go to physio and massage therapy to try to help with the back pain which seems to get worse with every passing day.
There are many other reasons why our family needs a van. A van is required to be able to have a lift or ramp installed. The hope is that he will walk, however, we’re not sure if that will happen and for how long. Installing a lift is extremely expensive running around $25,000.
A van is also needed to transport his equipment. We were fortunate enough to receive a special stroller system from Muscular Dystrophy Canada this past spring. It has three different uses; it is a bike cart so Jason can take him for bike rides in the summer, it is a high chair that can be raised or lowered for whatever it is we’re doing and it is also a wonderful stroller. We would like to be able to take it to Winnipeg, shopping and for walks but it is too heavy to lift in and out of the vehicle. This system has a retail value of $10,000 so we would like to use it as much as we possibly can. He also has large equipment that we need to transport occasionally like his walker which does not fit in the car.
We travel to Winnipeg usually three to four times a year to see the many doctors, therapists and specialist that are involved in Cayden’s care. Having a reliable vehicle that we know will get us to and home from Winnipeg would be one less thing for us to worry about.
Our family thanks everyone from the bottom of our hearts for the continuous support that family, friends and the community has so generously given to us. It has been an interesting and very emotional four years for us but the support whether it be monetary or for just being there has always been something that we could count on. It is always an extremely humbling experience for me to see how generous people are towards us and our family and we are truly blessed to have these people in our lives. With your continued support I’m sure we will reach our goal of securing the funds needed to purchase our van for Cayden.
On April 4, we took Cayden to see a genetics doctor in Winnipeg. We received a suspected diagnosis of Myotonic Dystrophy which was later confirmed on August 7 (which was coincidentally was our 9th wedding anniversary). Congenital Myotonic Dystrophy occurs when a protein on one of his genes in his DNA repeats itself. Five to thirty-seven repeats is normal, however, Cayden has 1500 repeats which is why he is so severely affected by it. This disease affects every system in his body to some extent. He also has significant developmental delays and is unable to crawl, stand, walk or talk.
We started this page to raise funds for our family to purchase a new van. Cayden weighs well over 35 pounds and is a very tall boy with long legs. Lifting him into and out of his car seat is a constant struggle. I have started having to go to physio and massage therapy to try to help with the back pain which seems to get worse with every passing day.
There are many other reasons why our family needs a van. A van is required to be able to have a lift or ramp installed. The hope is that he will walk, however, we’re not sure if that will happen and for how long. Installing a lift is extremely expensive running around $25,000.
A van is also needed to transport his equipment. We were fortunate enough to receive a special stroller system from Muscular Dystrophy Canada this past spring. It has three different uses; it is a bike cart so Jason can take him for bike rides in the summer, it is a high chair that can be raised or lowered for whatever it is we’re doing and it is also a wonderful stroller. We would like to be able to take it to Winnipeg, shopping and for walks but it is too heavy to lift in and out of the vehicle. This system has a retail value of $10,000 so we would like to use it as much as we possibly can. He also has large equipment that we need to transport occasionally like his walker which does not fit in the car.
We travel to Winnipeg usually three to four times a year to see the many doctors, therapists and specialist that are involved in Cayden’s care. Having a reliable vehicle that we know will get us to and home from Winnipeg would be one less thing for us to worry about.
Our family thanks everyone from the bottom of our hearts for the continuous support that family, friends and the community has so generously given to us. It has been an interesting and very emotional four years for us but the support whether it be monetary or for just being there has always been something that we could count on. It is always an extremely humbling experience for me to see how generous people are towards us and our family and we are truly blessed to have these people in our lives. With your continued support I’m sure we will reach our goal of securing the funds needed to purchase our van for Cayden.
Organizer
Jason Cross
Organizer
Brandon, MB
