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Jordan's Story 05 September 1998 Our son, Jordan Beliquette, was born at 7:40 AM on 15 May 1996. It was an extremely quick delivery. My labour lasted only five hours and Jordan was born only ten minutes after my water broke. Jordan was taken almost immediately to the neo-natal intensive care unit as he was very "floppy", had trouble breathing and his colour was not good. His cry was extremely weak, almost inaudible. Jordan was put in an oxygen tank, which he stayed in for only six hours. Jordan was too weak to suck therefore he was fed through a nasal tube for the first six days of his life. The doctors were unsure of the cause of Jordan’s health problems. Consequently, they administered numerous tests (all of which came back normal0 and was given antibiotics (in case of infection). On May 21, 1996, Jordan was released from the hospital as his tone had improved and was beginning to feed on his own. We were referred to a children’s treatment center (George Jeffry Center) where Jordan’s physical and mental development were monitored by an occupational therapist, a physiotherapist, a speech therapist and a social worker. As an infant, Jordan’s tone remained poor and he was behind the milestones for his age particularly in the area of gross motor development. Jordan had trouble holding his head up and was very inactive/passive. Jordan did not learn to crawl until he was fifteen months old, walk until he was twenty months old and at twenty-seven months Jordan still cannot walk up stairs. Jordan also has difficulty keeping up to children his own age and even children who are several months younger. We are; however, extremely encouraged by the fact that Jordan is still continuing to progress. Due to this progress, our doctors felt that Jordan was behind due to either a traumatic, quick delivery or more likely due to a non-progressive muscle disease called Benign Hypotonia. It was not until we received the results of a EMG and a muscle biopsy on 21 July 1998, that we learned that Jordan has Myotubular Myopathy. Dr. Kobayashi, from the Hospital for Sick Children in Toronto gave us the results and said that due to Jordan’s progress he believes that Jordan does not have the X-linked Myotubular Myopathy. However, Dr. Kobayashi is unsure of which category Jordan falls under. In addition, Dr. Kobayashi state that Jordan’s EMG results also showed symptoms of Myotonic Dystrophy. This is confusing as Jordan has been twice tested for the disease and both tests came back negative. Dr. Kobayashi stated that they are finding a new strain of Myotubular Myopathy, which combines both these diseases. Unfortunately, Dr. Kobayashi said that he did not know much about this new strain and could not offer us any information. We have not had any luck finding information through our own personal research (i.e., Internet, library, etc.) We would appreciate any information that anyone could offer up on the combination of moth Myotubular Myopathy and Myotonic Dystrophy. The doctors feel that Jordan’s prognosis for the immediate future is good, as he will continue to develop. After that they are unsure for three main reasons:
Jordan is a very active little boy who loves to ride his bike, play with every type of ball that exists, read swim and watch his favourite television program: Teletubbies. Jordan is always laughing and smiling and is very affectionate. My husband and I love Jordan more than we could probably convey and pray that Jordan will have a long, healthy and happy life. Laurie Berlinquette |
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