Bernie has Spinal Muscular Atrophy, Type II. He was diagnosed prenatally with SMA (because he had an older brother, Daniel, who also had it.) During the first 6 or 7 months of life, it was impossible to tell Bernie was affected - except that his hands started trembling at 3 months.

Because of his early diagnosis, we have been able to be pro-active in his physiotherapy, and he seems to have benefited from this. Bernie has learned to sit well unsupported, although he can't get into that position unaided. At 7 months, he could 'commando crawl' but he later lost the strength to hold his head up well enough for that. He can still roll.

Bernie hasn't lost any abilities since the age of 9 or 10 months. As he grew he has learned to use what strength he has. In his first 3-4 years, he actually improved in the areas of trunk rotation, tall kneeling, pushing his manual wheel chair, and standing in his long leg braces.

Bernie is very smart (naturally) and enjoys going to school in a fully-inclusive environment. His daily routine includes about an hour in his standing frame (at school) and an hour in the water at home. We feel these activities are essential in preserving his health. He had only a moderate amount of scoliosis by age 5.

The winter of 98-99 (age 2.5) was hard on him. He had 2 bouts of pneumonia, but both times recovered with oral antibiotics at home. In 99-00 (age 3.5), we took him out of preschool for the flu season, and he was much healthier. He had pneumonia in February 2001 (age 4.5), and had to be hospitalized for a week. Then in May he broke a leg right above the knee, and was in half cast for 6 weeks while it healed. (This has not impaired his ability to stand.) In fall 2001 he started Kindergarten (with an aide) and he did great - not even getting sick in the 2002 flu season. 

Bernie had a great experience in Grade 1 too, now using a power wheelchair, instead of a manual one. He was not ill for any extended times, though his scoliosis and contractures at hip and knee began to be noticeable.  In Grade 2 he continued to do well, though he got viral pneumonia over the Christmas 2003 holidays. We were able to keep him out of hospital (with the use of the in-exsufflator) but he was out of school for the month of January. This was the first time he'd been seriously ill in almost 3 years, and he recovered completely. In Grade 4 he began using a laptop computer to do some of his schoolwork, as he has a hard time writing fast enough to keep up with the class.

Bernie continued to do well in grades 5 and 6, though he became very ill in February 2008 with meta-pneumo virus and was in the PICU at McMaster Hospital for almost 2 weeks. He learned to appreciate a Bi-PAP, though he did not need it after he recovered. However, he grew quickly - like any 12 year old boy - and with growth has come worsening of the scoliosis. He has found it harder to breathe while in his Standing Dani, so a new stander is in the works for him. In Grade 7, he is doing well, learning to play the clarinet in band, but also finding it harder to breathe because of the scoliosis. Surgery is scheduled in February 2009, and Bernie started attending his regular class via webcam January to protect him from exposure to illnesses  before the operation.

Bernie is much stronger than his brother Daniel was - Daniel couldn't sit well, and his breathing abilities were quite compromised by SMA. As one doctor delicately put it, "There is no reason to think the outcome for Bernie will be the same as for Daniel." However, there is no disguising the seriousness of his condition. We can only pray that the Lord will grant him a full and long life, and hope that a cure is found in time to help him. If you want to help find a cure, direct your donations to Families of SMA in the States, or Families of SMA Canada.

Contact Bernie's parents, Ed and Bettylou Ross at rivendell@kw.igs.net

To Picture List by Date

To Picture List by Assistive Device

To Family Home Page

This page last updated on: January 15, 2009