Matthew’s long battle with Lafora is over. He is now at peace free from the ravages of this horrible disease.

Approximately 5 weeks ago Matthew went into the hospital for an infection that did not resolve with antibiotics after 1 week and 3 different antibiotics. Upon arrival to the hospital he did not appear to be that sick. Within 24 hrs, he was rushed to the ICU and we were told that he was septic from a urinary tract infection. Septic meaning the infection was spreading throughout his system, affecting his respiratory system. We spent about one week in the ICU, got him stronger, and then he was transferred to the stepdown unit. He never was able to recover and was diagnosed with hyperthyroidism, which revved up his metabolism to the point where he cannot keep any nutrition/medication in his body. Everything that went in came out. He eventually aspirated which caused rapidly increasing respiratory distress.

By Monday morning his condition had deteriorated to the point where the only way to keep him alive would be institute measures even more torturous and aggressive than the care he was already receiving. At this point we chose to give him peace. The hospital instituted comfort care measures to ensure he was in no pain and he passed later that afternoon. The ICP staff was wonderful to us during this terrible time, giving us time alone with him when we wanted it and sitting with us when we needed hand holding. The whole process was handled with the utmost care and dignity.

We would like everyone to remember the incredible strength Matthew showed during these long years if invasive care and terrible loss. He was an incredible young man who had to endure having his life stolen from him piece by piece. It would mean so much to us if you would take the time to share a memory of Matthew. He will live on forever in our hearts and memories

Lisa