My dad, Bill Cullen, has suffered from MS for 30 years being diagnosed at the young age of 25. MS acts in many different ways and for him it progressed quickly and made him wheelchair bound by the time he was 32. But despite all the obstacles MS has put in his way, he has remained the most optimistic and pleasant man. He has always been a great dad and now that I have two daughters an amazing grandfather as well.
He has been married to my amazing mom, Andrea, for 34 years, he has two wonderful kids, my brother Ryan and myself, Jennifer, a supportive son-in-law, Shawn, and two precious granddaughters, Emmie and Paige. Given that he is fully disabled and unable to do many things, his family is what brings him joy each and every day. He loves spending time with his granddaughters and is hoping to be able to create some wonderful memories with them.
Unfortunately, his MS symptoms have worsened significantly over the past few years and his quality of life has deteriorated. He no longer has enough volume in his voice to speak and the fatigue prevents him from being able to stay awake for more than 30 mins at a time. We are realistic to know that he is never going to walk again but we are hoping that we can improve his quality of life. We want to be able to give him those moments in life where he can enjoy his family.
There is new information that has come to light over the past two years about a condition that appears to be correlated to MS called CCSVI - Chronic Cereboral Venous Insufficiency. Clinical trials have shown that patients with MS have a condition where the blood flow is obstructed in the veins that drain the central nervous system (the brain and spinal cord). A physician in Italy decided to see what happens when the venous obstructions were removed, and his trial showed that relief of MS symptoms could be achieved. Many of studies have been conducted around the world now and they are all showing amazing results. My dad has been tested and he does suffer from CCSVI.
The procedure that unblocks the veins is called venoplasty, very similar to angioplasty and has few side effects, it is considered to be a safe, non-invasive procedure. Physicians all over the world are now performing this procedure in MS patients. Patients who haven't walked in a few years are now walking, the results are unbelievable. Unfortunately, in Canada, if you have been pre-diagnosed with MS they are not allowing physicians to perform this procedure. They have decided that there is not enough clinical data to support the use of it in MS patients. Even worse, they have also decided that Canada will not be conducting any clinical trials at this time. Right now they anticipate that Canada will not begin to offer this treatment for another 5 to 7 years. It is so sad to know that Canada has one of the highest rates of MS in the world and we are one of the only places where patients are unable to receive treatment.
Given the lack of support by the Canadian government this has forced thousands of Canadian's to travel abroad to receive treatment. We have been monitoring success stories of many of these patients over the past two years and we have been amazed with their outcomes. Finally, we have decided it is time to try to figure out a way to get my dad this treatment. The cost for the treatment alone is $10,000 not including travel or any additional stents that might be required.
Recently I was in touch with a new foundation in Barrie, Ontario, called the CCSVI Foundation of Canada. They are attempting to raise money for MS patients in Canada to help them pay for their treatment in the United States. The President of the foundation suffers from MS and has received treatment and saw fantastic results that helped improve his quality of life and now he is determined to help as many other MS patients as he can. We have sent in an application to the foundation for assistance to help pay for my dads procedure and hopefully they will be able to assist us. You can check out the foundations website at www.ccsvifoundationofcanada.org.
We just received a call from a doctor in Staten Island, NY that is currently accepting new patients. He has reviewed my dad’s file and he has cleared him for treatment. We have a treatment date of August 2nd .This means we have 3 to 4 months to raise as much as we can. Every little bit will help! We are hoping people will be willing to help by either donating directly to our fundraiser or to the CCSVI Foundation of Canada. There are directions on their website on how you can make a donation to the foundation or you can click on the paypal button below to make a donation directly to us. We appreciate everyone’s help and thoughtfulness. We will keep everyone posted along our journey.
Thanks,
Jennifer Cullen-Hollinger
