Gavin Middleton

Our little fighter is 15 mo old.  At only 22 weeks gestation he suffered a brain bleed and was later diagnosed with cystic periventricular leukomalacia (PVL), basically a hypoxic brain inury that affected most of his brain. He was at high risk for stillbirth but came out 5 weeks early (on Mother's Day 2015 :)) with no complications. Even though he was slightly developmentally delayed, up until his first birthday we were amazed by how well he was doing. At his 1 year well visit he ended up getting all of his vaccinations including the MMR which caused a fever and that is when our next battle began. We were told to expect the fever, but no one expected the continuing seizures. He did not have seizures prior to this. He has been hospitalized at our Children's hospital since 8/10/16 with a diagnosis of Epileptic Encephalopathy and every seizure medication tried has failed. He is currently on high dose steroids (and a bunch of seizure meds) which do not seem to be working and a vitamin B cocktail which is also not helping. He just had a spinal tap to check for vaccine induced measles (yes it's possible that all of this could be from a vaccine). Our Neurologists here are exhausting all efforts but still no answers and no clue as to what is causing the uncontrolled seizures and also causing his brain to shrink (cerebral atrophy). Our last ditch effort is to fly him to Texas Children's in Houston (ranked #2 in Neurology behind Johns Hopkins) in hopes of them figuring something out. We were super excited that Gavin was approved for a stem cell infusion at Duke University to help with some of the cerebral palsy symptoms (and hopefully reverse some of the brain atrophy) however they will not infuse unless we can control his seizures. The minute they stop we will be on the next plane to North Carolina! : ) We are currently trying to work out the transfer to Houston but because he is unstable we have to fly him there and our insurance will not approve a lateral transfer. I have continued to work nights so that I can be with him during the day but that won't be an option if we have to go to Houston. We have not received a quote on the stem cell infusion yet but are working hard to make sure that we give him every chance at a better (maybe wheelchair free) life. So this was our next idea/hope to cover some of the costs. We appreciate all of the prayers and support as Gavin faces yet another battle.