Unifor Local 506 Member’s Son Requiring Help

Fellow Members, Brother Chris Curwin’s stepson Paul Arthur’s story below is one of a miracle.  However, miracles sometimes come at a high cost!  Please read and help out if you can. 

In Solidarity, Lisa

Paul, now 27 years old, was diagnosed with two rare conditions, Senior Loken syndrome, which is characterized by the combination of two specific features…  a kidney condition known as nephronophthisis and an eye condition known as  Leber’s Congenital Amaurosis. This combination is very rare and affects 1 in 1 million people around the world.

Because of this condition, his kidneys failed 5 years ago and he was placed on dialysis 3 days per week while he waited for a suitable kidney donor. Two years ago, his mother was able to donate a kidney to him, greatly improving his ability to lead a more normal life.

Leber’s Congenital Amaurosis is also a rare condition, affecting 1 in 80,000 people. He received this diagnosis at a very young age. This condition is characterized by nystagmus (rapid uncontrollable eye movement) and poor vision. His vision is currently 20/300 in his good eye. It has been described to us that he sees the same as you might see looking through an 8 foot straw while placing 4 layers of wax paper over the end of it. Without treatment, his vision will continue to deteriorate until he is blind.

Despite these incredible obstacles, Paul has become a very productive member of society,   working in the IT field at a call centre. He has faced all of his challenges in a humble but determined way that is Paul’s way.

I have been keeping a close eye on research developments on his condition. Unfortunately, because the conditions are so rare, pharmaceutical companies are not interested in helping with research, so studies are privately funded through donations to several organizations, including the Foundation Fighting Blindness.

The good news is that they are working hard on finding a cure, and have identified the defective genes causing these conditions. There are currently clinical trial being conducted using gene therapy, and the results so far are looking promising. It may be some time before we know if he will be a candidate for future gene therapy, but we are hopeful that he will retain his sight until then.

In the meantime, there have also been amazing improvements in adaptive technology. A company called ESight has developed a set of unique glasses, which have proven to be successful in improving the vision of some of those with Paul’s condition.

We found out about the glasses by chance while doing some research, and contacted the company for more information. Paul recently moved to Winnipeg to be closer to his girlfriend, also legally blind… a girl he met at Walter Gretzky’s blind camp many years ago. The company recently visited Winnipeg to demonstrate the glasses to potential customers and Paul eagerly attended a private session.

While we watched from home on Skype, Paul tried on the glasses. His world completely changed at that moment. After some tweaking and adjustments, he commented that he was finally able to see his girlfriend’s face. He sat in awe as he looked around the room and saw for the first time the detail in a painting on the wall, a water bottle sitting on the table, and read the time on a clock on the wall. His vision improved from 20/300 to 20/30. He was able to read newspaper print. It was as if he had been blindfolded for 27 years, and was seeing the world for the first time. It was a very emotional moment for all of us.

The problem, as with most new technologies, is that the glasses are very expensive, now costing approximately $10,000.00. Knowing that someday the technology will become cheaper, our fear is that his vision will continue to deteriorate before the price drops. We know how much these could change his life completely, adding a level of confidence to attempt many of the daily tasks we all take for granted.

Here is the link to his story, in his own words:

http://www.gofundme.com/75yows

Let me know if you need any other info.

Thank you.

Chris Curwin

HVAC Technician

Bell Aliant Building Operations and Services

Cell: 506.647.5287

Fax: 506.674.1899

chris.curwin@bellaliant.ca