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For those of you that do not know Cooper or his story, it is one of great courage and miracles, with many highs and lows. When Cooper was three years old he was diagnosed with Neurofibromatosis Type 1, a genetic disorder that causes tumors to form on nerve tissue. Cooper has tumors throughout his entire body, including seven brain tumors, tumors throughout his spine and hips, a large plexiform fibroma that starts in the middle of his back and continues through his pelvis, ending just above his knee, and many other locations.
To date, Cooper has had numerous challenges and setbacks, often involving surgeries, that has left him with fragile mobility for several years now. At times, he has been dependent upon a walker and/or a wheelchair to navigate everyday life.
- He has had a spinal fusion due to tumors eroding the vertebrae in his lower spine, which left him with limited mobility in his left leg. Without this surgery, his spine would have collapsed entirely.
- Three years ago Cooper underwent another surgery to remove part of a large tumor that was transitioning into a malignancy.
- Cooper broke his femur as a result of a fall, which required surgery and lots of hardware in his pelvis.
THE BAD NEWS... On February 24, 2023, we received news that no family should ever have to hear—Cooper was diagnosed with cancer. A peripheral nerve sheath tumor in his left pelvic wall has turned malignant, and, unfortunatley, this type of cancer does not respond to chemotherapy or radiation. Another setback is the fact that the tumor involves his sciatic nerve, which is responsible for sensation and function in his left leg. After a week of deliberating amongst themselves, Cooper's phenomenal team of doctors and surgeons at Cincinnati Children's presented us with a surgical plan to remove the tumor. While the surgery is necessary and the only option, the doctors will have to remove a portion of Cooper's sciatic nerve as well, leaving him with a loss of function and partial sensation in his left leg.
THE GOOD NEWS... While we are full of grief as we work to come to terms with what this diagnosis can bring both short- and long-term, we feel immensely blessed to have something positive for our family, and more importantly, Cooper, to look forward to. Our family will be growing by four paws in the next 2-3 months, as we welcome Lucy, the yellow lab service dog into our family. If you are fortunate enough to have spent time around Cooper and any dog, you know that he has a special way with them. It's almost as if they speak the same language and know something that the rest of us don't know. Cooper's one wish for as long as any of us can remember is to have his very own dog. For a young man whose body requires so much of him and asks for so little in return, Lucy is going to make his dream a reality.
Most, if not all, non-profit organizations that provide medical service dogs to families free of cost have waitlists of 3-5 years. Given the circumstances, the wait simply wasn't an option for us. We have partnered with Dulebohn Service Dogs in Wapakoneta, Ohio to match Cooper and Lucy in the next 2-3 months, once Lucy completes her advanced mobility training. We've received a tremendous outpouring of prayers and love, and many people asking how they can help. This is our ask; this is how you can help!! Lucy will not only be able to assist Cooper with the new challenges he'll face post-surgery (open doors, retrieve dropped items, etc.), but she will be a tremendous source of comfort for Cooper and an everyday companion in life.
Regardless of where this next chapter takes us, we remain faithful in God’s ability to perform miracles. We feel blessed beyond belief to be wrapped in your love and prayers. It carries us further than you’ll ever know.
Organizer and beneficiary
Cynthia Smith
Beneficiary

