BENEFITING: SLAMT1D INC
EVENT DATE: Dec 12, 2015
Our Story: Many of you may already know about Jacobs Journey with Type 1 Diabetes. For those of you who aren't aware, Jacob was diagnosed with Type 1 Diabetes 6 months after being diagnoised with Hashimoto's Thyroiditis. In April of 2009 we went to the peditrician for our regualr yearly physical. It was always an exciting visit. I would get to see how much the kids grew and how much weight thy gained and of course hold their little hands while they received their immunizations. This visit things were much different. We learned that Jake hadn't grown at all since his last visit a year ago. We were quickly referred to an endocrinologist. I had no idea what to expect nor have I ever heard some of the terms the doctors were throwing at me. What I did know is that I needed to get him "fixed". After meeting with the endo and a full physicall examination he started to go over Jakes blood test results with us. I heard him say things like autoimmune disease and thyroid attacked by his own body. I was completely overwhelmed. Ultimately, we were told that all would be ok as long as he took this one simple pill a day and that we would need to continue to get blood work on a quartly basis. Simple right.
Fast forward 6 months. We made the move from NY to FL. Something my husband and I talked about doing for years. It was so exciting and new and fun. We got right to work and found and amazing endo who really educated us and helped us understand what Hashimoto's is and that it would never get better and that Jake would have to take medication for the rest of his life. We also learned that he was 2 years behind in growth and we needed to be as aggressive as possible to get as much natural growth as possible before his bones start to fuse. 1st set of blood work with her was good in fact she actually was able to lower his dose a little bit (which was a good indication that he was growing). We felt good and thought we were on track. Second set of blood work 3 months later and the endo calls telling me something is not right that his numbers are off the charts. I was shocked and admitted that we may have missed a pill or two over the past 3 months. She said that would't make a difference. She then asked me to walk her through our day and if I had any concerns. I told her that Jake had been drinking a lot and going to the bathroom alot as well as being extremely tired. She already knew something, I could hear it in her voice, but didn't say a word. All she said was that maybe we should take him to the peditrician. I immediately agreed and said I would take him right away. I hung up with her and called my husband to take Jake to the peditrician that they were wating for them. She said make sure they check his urine, because I thought he had a simple UTI and to make sure that they check his sugar. I had no idea what was about to transpire.
A few hours later I call my husband assuming that they are at the pharmacy by now waiting to get antibiotics for a UTI. My husband quickly answers the phone saying he can't talk right now he's still at the dr's office and they think Jake has Diabetes. Overwhelmed is an understatement especially since I had no idea what that even meant. I quick jumped in the car and called the endo. She assured me everything woud be ok and that we would need to see her in the morning. As soon as I saw Jacob turned to me and said "Mama, I don't wanna die". It was heart wrenching to say the least.
We met with our endo the very next day. All of us, grandma included. We all would need to learn how to "take-care" of Jacob. For 6 hours we learned how to administer insulin and count carbs. What blood gluclose is and how we now need to be his pancreas because his will never work again. And how it wasn't anyone did or caused but that it was an autoimmune disease much like the Hashimotos he was diagnoised with just 9 months earlier. It would have been easier to recover from getting hit by a mac truck then to have to watch my baby endure this life sentence of endless needles and countless fingersticks.
You see there is no cure for Type 1 Diabetes. There are pumps and montiors but no cure. As it stands right now, Jacob will need to continue to administer insulin in two different ways - one which is long lasting inuslin that helps regulate his blood sugar when hes not eatting and one that is a fast acting inuslin that he needs to inject every single time he eats for the rest of his life. No breaks, no holidays. Without insulin he will die. And if he doesn't manage it correctly, there are major complications that can come into play. Like kidney faliure and amputation of limbs. It's absolutley horrific to think of what can happen to my little boy all because of this damn disease that we didn't ask for, that he doesn't deserve.
4 Years later, Jacob had his first seizure. We were told this could happen if his blood sugars got dangerously low. We were shown once how to save his life if this ever happened. Once. One time I was shown how to administed Glucagon. A life saving injection of "sugar". We were told it would most likely never happen and that most diabetics go an entire lifetime with never having a seizure. It was the most frightening day of my life. Jacob went on to have several seizures over the next few months. It was ultimatley decided that his seizures were not caused by his diabetes and he was officially diagoised with Eplipesy. It would take months of trial and error in finding the right dose of medication to keep his seizures at bay. As you can imagine, my only focus was on Jacob during this time. I would check him every hour on the hour through the night as his seizure would happen while he was sleeping. I bought baby monitors with video. I would jump at the slightest noise always running to his room first.
Why my baby? Why so much? Why? Why? Why? I don't have the answers to any of the thousands of questions I have. What I do know is that we have met some amazing people along the way. We have been through so much yet we have been so blessed.
Why we are telling our story: Jacob has been given the distinct honor of joining an organization called Slam Diabetes. This organization rasies money for kids like Jake living with Type 1 the opportunity to go to Diabetes Camp. To spend time with other kids living with Type 1. To see that they are not alone.
Jacob will be competing in a wiffle ball tournament at USF this Saturday 12/12/15 along with 20 MLB players, some of which also have Type 1. The organization has set a goal to raise over $100,000 at this event. I am reaching out to you to help us send the countless kids living with Type 1 to camp this year. ALL of the monies rasied will go towards proving camps for Type 1's. It will give and mean more to a child living with T1D more than you can ever imagine. Any amount you can give, even just $1, would be greatly appreciated. Additionally, if you would be so kind as to spread the word amongst your friends via a simple post on facebook. We only have until Friday to raise as much money as we possibly can.
Thank you all so much!
PS....we only have until Friday to get this done! Jakes persoal goal is to reach $2000. But we can't do it without your help!
PSS....all donations are tax deductible :)
Many Hugs, Much Love and Tons of Kisses,
Jacob, Alysa, Dale and Bella
Until theres a cure, there's camp!