Brody was born in February of 1999 in La. USA. He also had 3 uncles and a 1st cousin who had MECP2 duplication syndrome all having varying severities of the syndrome. He started walking at 3 years old, but then lost his walk at 9 years old. He ate by mouth until 9 years old. He attended school and was a whiz on the computer. He didn't talk, but communicated thru pictures and objects. Seizures started at 6 years old and progressively got worse thru age 9. The seizures are uncontrolled even though he is on seizure meds and ketogenic diet, but they are much better. He has had many pneumonias, has a g tube, and needs 24 hour care. Even with all that is against him health-wise, Brody still fights on and is a strong warrior. He is the light of our lives.
We have worked to fund-raise for the cure for this horrific syndrome. Much progress has been made in the lab and we have hope for the future of MECP2 duplication being cured.