In Honor of Caleb Burgess

Caleb was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) in July of 2016 after many years of research and countless doctor visits. As with everything, he has faced this challenge as tough as nails, with a unique outlook, no fear, and a happy heart. We continue to be impressed with his positive attitude and never quit his outlook. He is truly a special soul and we feel blessed to have been chosen to raise him. There are only about 900 people worldwide who have been diagnosed with FOP and Caleb is one of them. Of the 900, only 4 including Caleb have been diagnosed with the specific genetic mutation that Caleb has. The good news is that this mutation may be less severe than the “classic” mutation. We are hopeful that the limitations caused by this disease will be mild for Caleb as he grows.

Although Caleb does have many extra bones throughout his body, he still has his mobility. Unfortunately, he is feeling the effects of this disease, on a daily basis, causing him pain in multiple parts of his body. He has been able to continue to play baseball with his whole heart (although running is now difficult) and for that, we are truly thankful. The uncertain future has been difficult for him and us to process. We have found comfort in knowing research continues and that the funds we are raising are helping. 

Truthfully, we do not know how quickly he could progress if he will, or when he will progress, but there is no doubt this is impacting him on a daily basis right now. He is living life to the fullest and enjoying every minute he gets to spend on the baseball field. 

What is FOP?

Fibrodysplasia Ossificans Progressiva is one of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another. FOP is Genetic disease affecting 1 in 1 million people. There does not appear to be any ethnic, racial, or gender patterns. There are only around 900 people worldwide (~285 diagnosed cases in the United States) who have been diagnosed with FOP. We have been lucky enough to meet some of them and they are incredible people who are always in our prayers.

Please help us support the International FOP Association by making a donation. The process is fast, easy, and secure. The funds raised will go to research grants working on the treatment of FOP and other IFOPA needs. Our fundraising efforts are focused on moving the research along so maybe, someday, those with FOP will not experience continued progression of this terrible disease.

We wrapped up our 3rd annual home run derby - Bombers for Bones - in July 2019 where over $40,000 was raised for FOP research! Watch for the date of our 2020 event!

Visit our website for more information about Bombers for Bones or to sign up: https://www.bombersforbones.com. You can donate to the IFOPA through this page or through the Bombers for Bones page.

We truly appreciate any support you can provide. Thank you so much from the bottom of our hearts!

Love,

Caleb, Scott, Stephanie, and Alli Burgess
#curefop 

The Devil Whispers,
"You Can't Withstand The Storm."
The Warrior Replied,
"I AM The Storm."

All donations will go directly to the IFOPA to help fund research and are tax-deductible. The IFOPA is a 501(c)(3) nonprofit organization. If your company has a matching program, please contact [email protected].