I have two sons that were born with X-linked lymphoproliferative disease (XLP) (also known as "Duncan's disease") a rare genetic disease that only affects males. My boys were the first in our family to be diagnosed 22 yrs.-ago. There was not much known about this disease so the treatment at that time was Immunoglobulin (IVIG) Transfusions every four weeks.
Unfortunately, my boys having this disease the longest with no known cure at the time suffered severe complications from this disease. My world stopped and my life changed forever when my 22 yr.-old son Tyler Nicholas Schrader lost his life on March 15, 2018 after a 2-month battle in Royal Oak Beaumont with Bacterial Meningitis and a Fungal Infection of the brain. This was a direct result of having no immune system from X-linked lymphoproliferative disease (XLP). Tyler would have celebrated his 24th birthday on May 22nd this year. There are no words to express my grief.
My 29 yr.-old son, Cameron Schrader is now in a fight for his life. Cameron was diagnosed with XLP when he was seven years old, Cameron receives Immunoglobulin (IVIG) Transfusions every four weeks (for the past 22 years). Even with this treatment he suffers with bouts of pneumonia, upper respiratory infections and severe acid reflux. Over the years he has been hospitalized multiple times with a collapsed lung resulting from Pleural effusion (water on the lung) and pneumonia. This allowed scar tissue to build up within his lungs resulting in a Lung Lobectomy which is a thoracotomy surgery to remove a portion of his left lung when he was 13 yrs. old. Cameron also underwent a surgical Fundoplication to have his upper stomach folded and sewn around his lower esophagus. After these surgeries he continued to receive immunoglobulin transfusions every month which allowed him to remain somewhat healthy throughout his teenage years. After Cameron graduated and entered the workforce, he began experiencing recurrent bouts with pneumonia again which forced him to return to the hospital multiple times a year.
Cameron is now left unable to work, and his health has declined so rapidly within the past 2 years that his body can no longer function without a regiment of daily medications, nebulizer breathing treatments and full-time oxygen. He is unable to do many of the things he is truly passionate about or enjoy the simple tasks that so many of us take for granted every day, such as walking, taking a shower and even talking have become strenuous for him. Even with the assistance of oxygen he rarely leaves his apartment.
Unfortunately, no hospital in Michigan can perform this risky surgery but thankfully his transplant doctor at U of M found a hospital that can. Cameron has an opportunity to be a part of a clinical trial with UPMC Hospital in Pittsburgh, Pennsylvania. In this clinical trial Cameron would be receiving a double lung transplant as well as a stem cell transplant from the same donor. This new method of organ transplantation significantly decreases the chances of organ rejection and in his case the stem cells would cure the symptoms of his Duncan’s disease. But Cameron will be required to move to Pennsylvania (possibly up to 2 years) in order to be eligible to receive the treatment through this clinical trial. Graciously Ashley, Cameron’s extremely supportive girlfriend, who has been his rock through this difficult time will be leaving her job as a Radiographer with U of M to care for him, leaving them both without an income.
Family and friends are hosting a Fundraiser on August 10th at Sidetracks in Lapeer to help raise money for their journey. We are asking for monetary donations or a donation of an auction item to help raise the necessary money needed for Cameron’s transplants. The money raised will help with their move from MI to PA and most importantly assist with Cameron’s medical care and medical expenses.
Thank you for taking the time to read my letter, Cameron tries his best to make the most out of every day and cherish every breath he takes. I greatly appreciate your assistance for his next breath in life.
For donations, questions or if you would like to help please contact: Kristy Hanchett (810) [phone redacted]
Cash Donations: Cure for Cameron Fund – PNC Bank ACCT#4122926627
6-6-19***Cameron has been in ICU at University of Michigan for the past 3-weeks with Rhinovirus, Pneumonia and Pneumatocele. U of M may be transferring him to PA sooner than expected because they are not having success in treating him at this time. They feel Pittsburgh is better equipped to treat him. I will keep you all posted.
- Daniel Coulter
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