This sweet boy is Bryce. Almost two years ago, he was diagnosed with Menkes at just five months old. Menkes Disease is a rare terminal genetic disorder in which causes a copper deficiency in the brain and body. This rare disease affects one in 100,000 to 250,000 male babies born. This syndrome has poor prognosis including short life expectancy. The Bell family is heartbroken and devastated knowing that Bryce may have a shortened life span along with all of the struggles that come with this terrible diagnosis. The journey so far with this diagnosis has not been an easy one. Bryce had his first seizure at three months old and the months that followed have been filled with MRIs, EEGs, blood work, spinal taps, genetic appointments, neurology appointments, physical therapy, trips to the ER and three admissions including ones to the pediatric ICU. Bryce has had multiple procedures and surgery including a G-button placement that he uses each and everyday for his feedings, medication administration and nutrition. He has also recently had some urinary issues cashing him to need catheterization multiple times/day. Menkes disease is a very rare disorder and the daily care for sweet baby Bryce has been unknown, scary and full of challenges.
I love this family so much and they are doing everything they can to care for their sweet baby boy. As you can imagine the medical expenses during this time have been and will continue to be extensive. Kasey has been fortunate to be able to work half time but even then has had to take unpaid time off work to care for Bryce while D continues to work full time. Hospital bills, medications, doctor/specialist visits, physical therapy, and just the day to day expenses are proving to be costly.
D, Kasey and big brother Brady appreciate all of the love, support, and prayers given to Bryce and their family during this time. D and Kasey will continue to update everyone on his #BryceBrave Facebook page. Please continue to keep this family in your thoughts and prayers.
Please know that no donation is too small. Bryce has his very own bank account that all donations will go directly into. Thank you so much for your support for this sweet boy and his family!
- Lisa Wedig
- Robin Grady
- Good Today
- Lynn Walton
- Cathy Berry
Organizer and beneficiary
Fort Worth, TX