Caydens' Myotonic Dystrophy Journey

Cayden was born on February 15th, 2013 in Brandon, Manitoba. He was delivered by emergency c-section then immediately rushed to the neonatal intensive care unit with respiratory and cardiac issues. He also experienced feeding difficulties. He was placed on a ventilator and various monitors and IVs. He was given caffeine to prevent his heart from spontaneously stopping. He was taken off the ventilator after two days and was put on a C-PAP machine for an additional four days. He was tube fed for the first two weeks since he was not strong enough to feed on his own. After 26 days in the NICU we were finally able to take our baby home on Wednesday, March 13th.

On April 4th, we took Cayden to see a genetics doctor in Winnipeg. We received a suspected diagnosis of Myotonic Dystrophy which was later confirmed on August 7th (which coincidentally was our 9th anniversary). “He has Congenital Myotonic Dystrophy”, the doctor said to us over a telehealth conference. I remember the day like it was yesterday and it is a day that has been forever engrained into our memory which we will never be able to forget even if we wanted to. I remember my heart dropping as the words repeated over and over in my head. As I tried to keep myself from falling apart, the doctor revealed some additional information. Since this is a genetic disorder, a blood test had been conducted on me and to our surprise, I was also diagnosed with Myotonic Dystrophy which I had passed on to my child without even knowing it.

Myotonic Dytsrophy is a neuromuscular disorder. It occurs when a protein in the DNA repeats itself. 5 to 37 repeats is considered to be normal. However, in Cayden case, there is a protein called the DMPK gene on chromosome 19 in Cayden’s DNA. This protein repeats itself 1500 times 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. I, on the other hand, have a protein repeat count of 500 which is a lot less than Cayden, but still quite high. However, I am told that my body has been coping very well with it. I have experienced some symptoms; cataracts, increased daytime sleepiness, occasional muscle cramping, and some muscle and joint pain, etc. but as a whole they are more of an inconvenience than a problem. As I age, my symptoms may become more problematic and affect my daily life more as I lose my muscle strength and become less able to do things for myself.

At first, when we originally were just diagnosed, I thought that if I didn’t tell anyone, no one had to know and if no one knew then nothing was wrong. We could just continue on with life as normal. But as time went on, I realized that pretending that nothing was wrong was not in the best interest of my child. We had to come to terms with what Cayden had and do everything possible to help Cayden reach his full potential and to be able to function in life as best as he could. Essentially, we wanted him to be able to do all the things every other kid does.

Of course, Cayden cannot yet do all the things every other kid his age does but we are certain he will get there in his own time. At this time he is unable to stand, crawl, walk or talk. However, we are involved with numerous doctors and therapist all who have dramatically helped him develop and make progress. They may be small accomplishments to some but to us they are huge! At this time last year, Cayden was not able to move to all. Now he is bum-scooting all over the living room floor and getting into everything he shouldn’t be getting into just like every other kid his age. Cayden enjoys the same activities that other kids his age enjoy. He likes playing with his toys, listening and occasionally dancing to music, going shopping, going for walks and reading books. He also likes to go for car rides which is a good thing since we have to travel to Winnipeg quite often to see some of the doctors, therapists, and specialists who are involved in Cayden’s care.

Cayden has many health care professionals involved in his care both here in Brandon and in Winnipeg. He has two pediatricians, two physiotherapists, (and a respirology phsiotherapist), two occupation therapists, a speech and langauage pathologist, a development worker, a developmental specialist pediatrician, a neurologist, a respirologist, a feeding specialist, an orthopedic surgeon, an opthamologist and a cardiologist will soon be added to the list.

Written by: Angela Cross (mother)