Jillian Critchley found out about her husband Peter’s affliction with CMT on their very first date, so being prepared for the worst was always on her mind.
This was the first time that Jillian had ever been exposed to the term CMT and found out very quickly from Peter and his family what impact it would have on their lives.
Notwithstanding the adversities, Jillian and Peter decided to marry and later planned to have children. The knowledge that the possibility of their offspring contracting CMT was 50% forced the couple to seek advice from friends, family and also attended genetic counseling.
Although reactions were varied, with some friends thinking it would be unfair to bring children into the world with a disease that would probably limit their lifestyle and, possibly profession, Peter and Jillian decided to go ahead with their plans.
The counselor they visited commented that the couple was better informed than most people on how to deal with CMT and encouraged them to commit to their dreams. Jillian’s deep knowledge and understanding of CMT, through Peter and his family, reassured her that she would be prepared when the time came.
When Jillian first became pregnant, the couple decided not to check for symptoms of CMT before the child was 1 year old. Although Matilda was born prematurely, at almost 10 weeks, she turned out to be a healthy baby.
Tests later revealed that she did, in fact, have CMT1A, which is the most common form of CMT. Through Peter’s own experience with the disease and the range of therapies and medical assistance available at the time, Matilda was immediately placed on a rehab journey, to delay any symptoms and make her physically stronger.
Two years after Matilda’s birth, another beautiful daughter, Eleanor, was born. Again, the couple waited 1 year before diagnosis and, again, the results showed that even she had inherited the CMT1A strain of the disease.
Early on in life, problems are evident to the parents, such as walking late (almost at 2 years old), trouble balancing and walking, tying one’s laces or dressing oneself. Eleanor was once teased at school for walking “funny” and reacted with dignity, saying that no-one was perfect.
This reaction was the culmination of thorough preparation from the parents, who foresaw the potential issues that might arise from other children. Seeing the children struggle to perform daily chores has only strengthened Jillian and Peter’s resolve to participate in foundations and educate people about the reality of CMT, which is still a mystery to millions of people around the world, although affecting many.
Few countries actually have their own foundation to count on in times of need and finding useful information to make life easier for CMT sufferers is hard to come by. Matilda and Eleanor continue to battle CMT but they do not allow this disease to overcome their desire to live a normal life or to restrict them in any way.
You can read more about Jillian, Peter, Matilda, and Eleanor on ABC Australia
Image source: Alessio Rossini on Flickr