Lorraine Bileski was a guest speaker at the Auxiliary's April 2019 Meeting here are her words - -
Rylan was born at 28 weeks this was extremely premature and caused him to have cerebral palsy. It is not a progressive disability but also not a curable disability. With his diagnosis we learnt his gross motor skills would be affected therefore we were told he may not walk but we refused to believe that. When we began to run into problems here getting treatment and equipment Rylan needed we then discovered Shriners through my husbands coworker and started the application process and then attended appointment with specialists in Minneapolis.
The ladies auxiliary has made a huge impact on our lives and the well-being for Rylan. Our first appointment with Shriners hospital Twin Cities unit in Minneapolis was just like Christmas and that was the actual words from our Therapist at the hospital. When we went to our first appointment Rylan was about 2 years old he was not walking yet so we relied on our infant stroller yet at that time. We had applied for a stroller here in Manitoba with children's disability services and we were denied. So one of the first things Shriners noticed was our lack of equipment and asked what they could do for us we explained our issues getting equipment and it all started there.
We were given a McLaren stroller which i believe had a weight limit up to 100 pounds Rylan was estatic he was no longer in a baby stroller. This was huge because he could't walk yet and he was too big for the infant stoller so now we had transportation for him and was much easier on us not having to carry him everywhere.
During this visit we also got arm crutches, a kaye walker and AFO's with shoes that actually fit over the orthotics. He was always so excited to get new orthotics because it meant new light up specialty shoes. All of these items prepared him for walking eventually.
Seeing him upright with his walker was the most incredible feeling he was able to be face to face with his peers not crawling or sitting or on the floor he could do everything his friends were doing allowed him some independence something he didn't have until then. This first appointment was life changing for us all.
I don't remember the actual year but somewhere before he was 5 they had given us a wheelchair as well. It was used but it served us well andwe used it for man years til he outgrew it.
As time went on and he matured more (when he was 6 years old) he was a candidate for a specialized surgery on his spine. The wheelchair was retrofitted with a special seat and back for this special surgery.
We still continued getting many AFO's through the years as he grew. When he was 10 he went for yet more surgery and the Auxiliary funded a brand new wheelchair as he had outgrown the other one and it was no longer able to adapt. Rylan was so excited because he picked the colour Gold, we called it his chariot. He had a major surgery to both legs at this time so he was extremely week and needed a lot of therapy to get him back on his feet. That wheelchair has made many miles just last summer when we were back for followups we took the chair with us and they said it needed to be adapted because he had grown so much. So the chair was left down there to be retrofitted with some parts that the auxiliary had funded again. They put new wheels made the whole chair wider and bigger.
We donated the old chair back to Shriners once we received the gold one.
Rylan walks but does use a wheelchair if he has to do a lot of walking he tires easily and uses a lot of energy. So this piece of equipment is so important to him for his safety.
We regard Khartum Temple so highly and all you do for your families. I do believe Rylan would not be walking today if it weren't for this amazing organization. You gave us hope and the tools we needed to see him be a normal little boy playing with his friends running through puddles in the spring just like every little boy and now he is 15 and taller than both Dave and myself.
Getting the equipment we needed made our lives easier and not having to pay for them took so much of the financial strain off our family. Thank you for everything you do.