Journal Entry 7

Jacob was only four years and one month old when he passed, which was a couple months ago. We were expecting it, but none of us wanted it to happen. Even though he died young, we think we gave him as good of lifed as we could, and our greatest source of comfort comes from knowing that he is no longer suffering.  We owe a lot to all of the organizations and hospitals that helped us with caring for Jacob and his disease. Being personally affected by it, my family and I are going to devote as much time as we can to do everything we can for organizations that help patients with Tay-Sachs disease. I hope this blog will help other people dealing with Tay-Sachs by showing them that they're not alone and that there will always be help out there.
Thank you for reading.

Journal Entry 6

Jacob is now about three years and a couple months old; things are bad but he is doing better than most at his age. After a major seizure a week ago, he has been permenately hospitalized so he could be monitered frequently. He has lost his hearing completely, but he still has some of his vision. His motor skills are gone, and his mental health is very weak. It kills us to see him like this every single day; I can hardly take it anymore. They have given him less than a year to live. 

Journal Entry 5

Jacob is about two and a half now. He is still fighting strong, though we are frequently at the hospital or doctors' office. Things like his motor skills, vision, hearing, intellectual ability, and social health are starting to slow down significantly, but he is still our little Jacob.  Physical therapy and respiratory care are also things that have to be done. The physical therapy is to stimulate his muscles and joints because of their disuse. The respiratory care is to help with all of the excess mucus created in his lungs. It kills us to know that he is suffering but to know that he is still going strong gives us hope.

Journal Entry 4

Jacob is now about two years and a couple months old. We are currently in the hospital waiting room; he had a very serious seizure today and was transported to the emergency room. Things haven't been great, but we have been making it through the months. But today was the worst yet. The doctor has just told us that he needs to be hospitalized until futher noticed. He explained that because Jacob is lacking the enzyme Hexosaminidase A, there is nothing to break down a fatty substance called GM2 ganglioside. He said that the fatty substance is swelling and destroying the neurons in his brain and spinal cord. It was also explained that his ability to swallow is deminishing, and that he will need to be fed by a tube. I couldn't believe it, but it was the ttruth. Jacob shouldn't have to go through this.

Journal Entry 3

Jacob is now about one and a half years old. Doctors visits and medications are now a very normal thing. The doctors have told us that his muscles are getting much weaker. We have noticed that he has developed a stronger reaction to loud noises as well. But the worst part is that he doesn't smile as much anymore. We knew it was going to happen but just didn't want it to. It is becoming really hard.

Journal Entry 2

Sorry it has taken so long to post again, but im glad to say that Jacob is doing better than expected at almost a year of age, though there has been some symptoms showing up lately. His motor skills have been slowing down; he can't crawl but is better at sitting up. Just this week, he had his first seizure; it was very hard to witness. When we took him to the doctor they gave us medicine to help him with that. And even with all of this happening to him, he still hasn't lost the ability to smile, and seeing him smile just give us hope. I just hate waking up everyday knowing that there won't be a cure for him in his lifetime, but like i said; we just have to make his life as comfortable as we can.

Journal Entry 1

So my wife, my son, and I just got back from the hospital. We had first made an appoitment because, at six and a half months, my son, Jacob, couldn't sit up without assistance. He also wouldn't reach for toys and he couldn't hold onto them either. They said he was probably just fine and that all babies grow at different speeds, but they did say he should have an eye examination. So we had the eye examination at the hospital today, expecting them to say he is just fine, but what they was something that shattered our universe. They said they saw a cherry-red spot in the back of his eyes, and that this was a characteristic of Tay-Sachs disease. This news shocked me, especially because we are both not Jewish; we were both carriers of it and didn't even know it. Knowing that my son is going to die at a very young age kills me, but we are going to try and make the best out of his life with us until his last day. I will try to keep up with this blog in hopes that other people dealing with Tay-Sachs disease can read this for help and comfort.