Last week Evie met Virginia or “Wish” as her friends call her.  Virginia was in Toronto to visit with her friend Liz who was here from New York.  Liz was working with Mike Poole for the week as he specializes in SDR rehab and is in Toronto working with several families (we hope to work with him next time he comes here) for a few weeks.  Both of these ladies are in their 30’s, are super nice and have CP.  Liz actually had SDR 9 months ago with Dr. Park  and Virginia is on her own SDR journey.

I was so happy to visit with these two women.  Not only are they fun to be around, but they are also a source of knowledge into a world Evie is part of that I will never fully understand.  Talking to them about living with CP and the affects it has had on their bodies as they aged, just confirmed again that we made the right decision to move forward with SDR.  Virginia and I actually connected online right around the time Evelyn got accepted for SDR and she really helped me understand why we had to do this surgery.  Life with spasticity is not easy and both ladies were told they would lose their ability to walk without this surgery.  Before SDR Liz described her legs as feeling like giant heavy tree trunks she had to lug around all day causing pain.  She said since SDR she is pain free!  Amazing!

Virginia is in the thick of her fundraising campaign and is slated for March 2019 but she is in a race against time.   Even though she has a date, she really needs SDR ASAP as her mobility is declining.  Many adults with CP notice a decline by their mid-30’s.  Virginia is living in pain daily and the spasticity is taking a toll on her body, though she is always positive!  The contracture in her knee (due to tight hamstrings) is making it hard for her to get around.  Adults who are not able to walk independently and use a walker or a wheelchair are not eligible for SDR and this is her one and only chance to have the surgery before it is too late.

There are a few fundraising initiatives going on right now to help Virginia get to St. Louis.  In addition to a lovely visit, we also picked up our beautiful bracelets that are being made to help raise funds.  The beads are jade and are from Prince Edward Island and each bracelet has a shooting star charm! So cute!  There have been orders from all over Ontario and even from Sweden, Ireland, Spain and Singapore.  It is very cool to know we are wearing matching bracelets with people from all over the world who are all supporting such an amazing person!

The issues that Virginia and other adults with CP experience are the reasons we chose SDR for Evelyn.  Yes, she is considered mild, but hearing from adults who were considered “mild” as children and are now at a point where they have lost so much of their mobility is scary.  I hope that more families and people with CP learn about SDR as a potential option.

As parents of a young child who has CP, it has been really beneficial having someone to go to who can explain life with CP first hand when Evelyn can not.  Thank you Virginia for all of your support and insight over the last few months!!!!

If you have a moment, please visit Virginia’s website.  She also has a Facebook group and a GoFundMe page.  If you are interested in purchasing a bracelet, please e-mail walkwithwish@gmail.com.

Happy Monday!