What started as just Brody’s battle quickly turned into a fight with his brother as well. We have 4 kids. 2/4 have batten disease. Brody had his first seizure shortly after 3 years old at the pumpkin patch. It only took us 7 months to get a diagnosis because of how quickly he was declining. We were told we had to test our other children as they had a 25% chance. Never even thought we’d have another child in the fight. Both of those phone calls will never be forgotten.
We travel 3 hours each way to Nattionwide Children’s. We reside in another neighboring state and stay at the Ronald McDonald house the night before infusions. It’s truly a blessing to be able to do that. This community is amazing, and the financial burdens alone for families is substantial.
