Help Silas's fight against cln2 Batten Disease

Batten Disease steals childhood leaving children unable to walk, talk,swallow, see and eventually taking their life! We are asking for donations to assist Silas as his Disease progresses.  Here is his story.
November of 2020, I woke up to my 3 yr old son Silas crying uncontrollably in bed. It took me a while to calm him down before he passed out for a few hours. I thought he had a night terror. A month later, I witnessed the same uncontrollable crying and passing out as prior. I was confused as to why this was happening but after he would wake up from these episodes and he would be fine. Fast forward to January 2021, Silas had been misbehaving so we put him in his bed for a time out. When we went to talk to him about his behavior, Silas was laying in his bed staring at the wall. He wouldn't even look at us. My husband touched him and felt he was twitching. We realized at that moment he was having a seizure. Once he stopped seizing he began crying uncontrollably until he passed out. We now know he wasn’t having night terrors. We immediately rushed him to Children's Hospital. He was evaluated and discharged. Since we only witnessed one seizure, which can be commen in young children, the doctors didn’t do much at first but monitor. Within that same week Silas had another seizure this time while he was at daycare. Again, we immediately rushed him to Children’s Hospital. From there, they ordered an EEG, MRI and genetic testing. His EEG and MRI results were negative. A month or so later we got a call they had received his genetic test results and they asked us to come in to talk about them. Of course we were worried but nothing could have prepared us for the news we received. The neurologist said he tested positive for Batten Disease. My heart dropped to the floor. Unfortunately, we were already familiar with this disease because my husband's cousin had lost two young children to this awful disease. We left the hospital in a fog, shocked and in denial. He had a speech delay but other then that to us he was perfectly fine, our handsome little boy! Batten disease is the common name for a broad class of rare, fatal, inherited disorders of the nervous system also known as neuronal ceroid lipofuscinoses, or NCLs. In these diseases, a defect in a specific gene triggers a cascade of problems that interferes with a cell’s ability to recycle certain molecules. Most children lose the ability to walk, talk, see, swallow and eventually their life! Cln2 has a treatment that is supposed to slow the progression of the disease, but this in NOT a cure. Two weeks after the diagnosis, Silas had a port implanted in his brain so he would be able to receive infusions. A few weeks after that he started treatment in Madison. His treatment is administered everyother week. Madison is about an hour and a half drive each way for us and infusions take about 6 hours. Unfortunately his treatments will be forever until a cure is found.