Bryce’s Courageous Battle + Research Fundraiser
Bryce’s Story via his Mom, Karen:
Bryce is our courageous thirteen-year-old son that was diagnosed with Ollier’s disease (bone tumors) at the age of 6! This very RARE, INCURABLE disease affects 1 in 100,000 children worldwide. Bryce was only the second case of Ollier’s they had ever seen at UMASS Medical Center, in Worcester, MA.
Bryce has tumors throughout his rt. pelvis, rt. femur, rt. tibia, rt. foot and ankle, left forearm, and 4 out of five fingers on his left hand. These tumors have caused shortening and deformity of Bryce’s limbs which has led to 10 major surgeries over the past 7 years. Because there aren’t any treatment options, Bryce will continue to endure surgery after surgery. All of these surgeries come with great risks, long recovery periods, lots of pain, nerve damage, possibility of amputation, post-traumatic stress disorder (which Bryce has), etc…
Bryce has the most amazing smile that can light up a room and melt the toughest of hearts. This disease has robbed Bryce of his childhood and will continue to rob him from being the boy/young man that he so wants to be. Bryce spends each day in pain, and when it becomes too much will resort to using his wheelchair. He continues to feel left out and is afraid of what’s next. Despite all of this, he will do everything he can to be “Normal” even putting himself in more pain to be with his friends, which is such a double edge sword. I will never forget what Bryce’s pediatrician said to me 6 years ago, “It’s so hard to imagine that a boy that looks so healthy on the outside is so fragile on the inside”. It’s the fear of this that has kept him on the bench vs. running around with his friends over the past 7 plus years, amongst other things.
We already chose to avoid amputation of his left forearm with a salvage surgery that left him with a one bone forearm. At the time we felt that if he had to lose his right leg he would need his left arm and it was worth a shot to try the surgery even though less than 5 had been done by his Orthopedist who works at one of the top 10 pediatric hospitals (Boston Children’s) in the country. This 8 plus hour surgery has left Bryce unable to rotate his forearm and wrist. He can’t lay or hold his hand in a flat manner and struggles to do everyday things we take for granted. We have revisited the option of amputation of his left forearm discussing it with him in great length but at this point in time, he is not ready. We do know that he does think of it as he will make remarks regarding technology and what he could do with a prosthetic forearm.
On top of all of this Bryce has a 50% chance of developing Chondrosarcoma (skeletal cancers), 25% chance of developing a Glioma (Malignant Brain Tumor), and a 20-30% chance of developing a secondary form of cancer due to the Radiation exposure from all of the x-rays, CT’s, body scans, etc… As well as infertility.
Bryce’s courage has inspired us to do something to help him and the other children suffering from this relentless disease.
We found a research Dr. that was interested and willing to take on the project. Dr. Matthew Warman from Boston Children’s Hospital met with us and even informed us that he has a drug in mind. Because all research projects are independently funded we need to raise the funds required ($75,000). This is our fourth year/campaign raising money. In 2015 we were able to raise $10,863 and in 2016 we raised $19,983 and in 2017 we raised $10,130. While this is a great start, we need to do so much more to get this research started!
We hope that you will find it in your heart to help Bryce and all of the other children that are out there suffering by making a donation.
We Can’t Do This Alone ~ No amount is too small and 100% of your donation is tax deductible!!
You can also send a check made out to:
Boston Children’s Hospital Trust
To ensure the money goes to this specific research project…
Please send it to:
Bryce’s Courageous Battle
54 Eagle Drive
Dudley, MA 01571
Please feel free to share this page as well as any of the links below and contact us with any questions.
We thank you from the bottom of our hearts!
~Bruce, Karen, and Bryce
To Read more about Bryce’s Journey: