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Support Superstar Tyler Peryea To Kick Cancers Butt!

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Tyler Mason Peryea was born on 12/28/2009 to thrilled parents Brad and Jamie. Right from the beginning Tyler’s personality shined, he was an easy-going happy baby, full of life and love with a beautiful contagious smile. Jamie and Brad completed their family when they ecstatically welcomed Tyler’s brother Cameron on 3/22/2011. The family of four was on top of the world with joy and excitement when in April of 2011, Tyler just 16 months old, was diagnosed with Hemophagocytic lymphohistiocytosis. HLH is a very rare, life-threatening immune deficiency disorder that occurs when white blood cells malfunction and damage organs. At the time of Tyler’s diagnosis, the disorder was so rare that it was described to affect just one in a million! Cameron was only 6 weeks old when the family began a long and treacherous journey. Tyler underwent many months of treatment on various chemotherapy concoctions alternating with strong and varying steroids. At one point Tyler was on life support in ICU for several weeks with severe organ failure. Tyler responded to treatment over time but was never in remission. It was a scary time in the family’s life and they battled many obstacles and very low points but they never lost hope and remained positive that their amazing son would find a way through this. The treatment team determined that Tyler’s HLH was caused by a gene mutation and the only cure would be to undergo a Bone Marrow Transplant.

Tyler received treatment at Hasbro Children’s Hospital in RI for 7 months before being transferred to Cincinnati Children’s Hospital where he received his bone marrow transplant from an unrelated donor named Benjamin Andrews. Ben’s wife had just given birth to their son Alan 6 weeks prior when the family selflessly made the decision for Ben to donate on January 4th, 2012. Originally Tyler and his mom were only supposed to spend between 30-45 days in the Cincinnati hospital but due to severe complications the hospital stay turned into 211 days. Tyler was home for barely a few days when he developed another serious life threatening blood disorder called autoimmune hemolytic anemia. AIHA is a rare disorder that occurs when the body's immune system mistakenly attacks red blood cells, causing them to burst. This put Tyler back in the hospital on and off for another 2+ years during which he was treated with low doses of both chemotherapy and steroid for years. Thankfully by the time Tyler reached first grade his immune system was strong enough and most health issues were under control. Some years were of course better than others but for the most part Tyler was fairly stable. Throughout his childhood Tyler had chronic ear infections, a few hospitalizations, oral surgeries, constant blood work and frequent infusions both at home and at the hospital. Tyler always handled everything that was thrown at him like a champ, and with a beautiful beaming smile.

Throughout all of Tyler’s hospitalizations, Jamie was able to stay with Tyler but Brad had to return to work once he had exhausted all of his sick and vacation in order to keep the family’s medical insurance. Cameron spent the first four years of his life primarily in the care of his grandparents which was such a blessing to have their help; yet was also heartbreaking to not all be together. As we can only imagine long hospitalizations of such intense treatment are very challenging financially, there were many bills that went unpaid, and Jamie and Brad struggled to make ends meet. The first time Tyler had come home his medications cost almost $300 for just one week’s supply.
Fast forward to 8th grade and Tyler battled one virus after the next and wound up in ICU with sepsis, double lung pneumonia and his AIHA had come back with a vengeance. Tyler again went back on steroids and low doses of chemo. He responded well but it still took several months for him to be able to safely discontinue the steroid medication.

In August of 2024, Jamie, Brad, Tyler, Cameron and their extended family returned from a cruise vacation and celebrated Tyler’s best blood work to date! The family was over the moon happy with the results! On September 17th Tyler wasn’t feeling well, a trip to the ER revealed he had COVID and pneumonia. Jamie and Brad felt hopeful because those types of illnesses can be treated with antibiotics and antivirals. However, after being in the hospital for one week, Tyler wasn’t feeling better. A bone marrow biopsy confirmed the devastating news; Tyler now had a rare form of acute myeloid leukemia. Only 2-4% of AML patients have this form, AML is a cancer that occurs when the bone marrow produces an excessive number of abnormal blood cells. Tyler immediately underwent an aggressive round of chemo; however, his leukemia cells weren’t responding well. 5 weeks passed of Tyler being in the hospital with tons of CT scans, MRI’s, medicine, weekly spinal taps with chemo, bone marrow biopsies, etc. During this time the family found out that once again Tyler’s rare leukemia was caused by a genetic mutation, this one caused from his first bone marrow transplant. Because of this heart wrenching news, Tyler will now need to undergo a second bone marrow transplant. Tyler needs to be in remission (no present leukemia cells) before he can undergo another bone marrow transplant. On 10/24 Tyler was admitted to Boston Children’s Hospital for round 2 (33 days’ worth) of chemo, this time with a new chemo medication that only a few hospitals have access to.

In early December, Tyler’s biopsy results showed that Tyler’s leukemia cells were way down but unfortunately, they weren’t low enough for him to undergo the transplant. Thankfully the amazing doctors were able to get Tyler admitted to Hasbro Children’s Hospital in RI on 12/6 for his 3rd round (28 days) of chemotherapy with the same innovative medication.

Everyone who knows this family LOVES this family. Tyler is an incredible 14-year-old kid, he is strong and always the kindest person to everyone. He is sweet and thoughtful and puts others needs before his own. Tyler’s family and friends thanks everyone for their support and prayers. Whether you can support them with prayers, sharing their story or donating to ease the financial burden, all is greatly appreciated. Tyler has been through so much but remains positive and happy even in the most difficult of situations, he is an absolute inspiration!

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    Organiser

    Rebecca Bears
    Organiser
    Cumberland, RI

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