Chad and Heather Daniels have two children, Katelyn and Brycen. Brycen, their youngest child, was born 5 weeks early and spent the first 2 weeks in the NICU with premature lung disease. When he was 3 years old, his mother took him to his pediatrician to show him some “bumps” that had developed. He was immediately sent for X-rays. After the X-rays were performed, he was diagnosed with Multiple Hereditary Exostoses (MHE), a rare bone disease. In most cases, MHE is inherited from a parent; however, in Brycen’s case there was a spontaneous mutation. Multiple Hereditary Exostoses (MHE) is a rare medical condition in which bony spurs or lumps develop on the bones. There is no cure for MHE; however, specialists can do surgery to remove the tumors that cause pain or problems to the bone. They can shorten the bone or even change the shape of it. As you can imagine, it takes highly specialized doctors to manage Brycen’s care due to the rarity of this disease. Brycen is cared for at the Paley Institute in West Palm Beach, Florida where they have developed the world’s first MHE center.
Brycen had his first surgery in August 2016 at the Paley Institute. He had 6 tumors removed during this surgery. Two tumors were removed from his left wrist to improve the rotation and correct the bowing, two other tumors were removed from behind his left shoulder blade (these had the highest chance of turning cancerous), and lastly, he had a tumor removed from just below each knee. After surgery, Brycen had to spend 2 weeks in Florida and once discharged to home he had to undergo 7 weeks of rigorous physical therapy to learn how to walk again, as well as, stretch numerous muscles.
In August and October of 2017, Brycen had two major surgeries!! After these surgeries, Brycen will be in a wheelchair once again and have months of extensive skilled physical therapy to learn to walk again.
As anyone can imagine, this takes not only an emotional and physical toil on Chad and Heather, but also creates a huge financial burden. Brycen’s doctors are 700 miles away and every time they go for surgeries they are there for 2-3 weeks. Brycen’s insurance doesn’t cover any physical therapy treatments and their part of the surgical costs are astronomical. This upcoming surgery will not be the last! The doctors have told Chad and Heather that he will have several more surgeries in the future as they will eventually have to go back in to remove the metal plates. Also, due to the nature of MHE, he will continue to develop tumors as he grows that will have to be removed.
Please consider donating to help alleviate some of the financial burden put on this precious family. Your contributions will go directly to the Daniel’s family for Brycen’s medical expenses. Thank you and God Bless You!
- Karen Heger
- Ben Smith
- Ann Springs
- Edward ODell
- Justin Sparks
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more