After experiencing the most enjoyable event of our lives in August 2013 ( giving birth to our beautiful baby boy Troy ) our lives were forever turned upside down with the news that my husband Mike, has Systemic Scleroderma. Systemic Scleroderma is a rare autoimmune disease that can invade internal organs caused by an over production of collagen that hardens internal and external healthy tissue. In Mike’s case, while his skin has had almost no evidence of the disease, he has unfortunately had invasion to his lungs with a condition called “fibrosis” or “scarring” of the lungs. This fibrosis, which is still advancing, is essentially killing Mike’s lung function which is already down to 50% of normal capacity. This condition cannot be reversed, and in his case, is progressing rapidly. Once his lung capacity reaches 30% he will be considered to be in end-stage lung disease which usually leads to death if a lung transplant is not possible. A lung transplant can possibly give Mike a 60% chance of 5 years survival only if he becomes a candidate. and providing the lung transplant is successful and the anti-rejection medications afterward are also successful. Needless to say, our lives have been changed dramatically since Christmas 2013, and sadly the joy of bringing a new life into the world has been horribly overshadowed with this devastating news.
Many of you know that we are fighting very hard to cope with our new reality and we are trying to make the best of the time we have together. It has been extremely difficult, however, we have some good news. We have diligently researched new potential treatments for Mike, and have found some hope in a new treatment called a Hematopoietic Stem Cell Transplant (HSCT). A well known, passionate and brilliant doctor in Chicago called Dr. Richard Burt has pioneered the use of stem cells to treat patients affected with the same condition as Mike. While he is still completing clinical trials for official FDA approval of this treatment, his success rates are extremely high ( 7o% ) with a mortality rate that is extremely low ( 5% ). The stem cell transplant basically is a process where they will take Mike’s stem cells, harvest them, use massive doses of chemotherapy to kill the immune system and then replant his stem cells. Essentially, this approach utilizes immune specific drugs and autologous stem cells to “reset” the immune system. This is a onetime treatment as opposed to ongoing treatments and help approximately 70% of patients who improve dramatically and require no further immune therapy. If successful, Mike will be able to live a normal life with his own lungs.
We know this sounds like great news and we are excited! However, there is still a risk that it will may not work. This treatment is not covered by OHIP. The full cost of this treatment and related costs will exceed $150,000 U.S. and it is for this reason we are reaching out for help. Although many of our cherished immediate family members have come forward to offer emotional and financial assistance, we still require additional financial support for this to happen. We are on bended knee seeking financial help from everyone and anyone who is willing to help us get through this, and most importantly, save Mike’s life.
We will graciously accept any donation of any size, and all donations will be recorded by donour and the amount to facilitate a possible reimbursement should our OHIP Out-of Country application be approved, or if for some unforeseen reason comes up that prevents Mike for receiving this treatment. All funds will be held in a TD trust account. As time is of the essence, we are hoping for this stem cell transplant to occur in November of this year.
Please help Mike with the gift of life, allowing him to have many more cherished years with his family and our baby boy Troy.
All our Love and Thanks,
Christine Cooke, Michael Berry and Troy Berry xoxoxo