I am the parent of a child that was diagnosed with Juvenile Diabetes(also called Type 1 Diabetes) at age 3. His diagnosis was a very traumatic event and it changed the course of our lives forever. At first it was the getting used to the daily care needed to try to get a 3 year old's blood sugar remotely into a range. It was a huge challenge, and a very stressful and scary time. We had lots of blood sugar highs and lows all the time. I had to poke his tiny fingers 6 to 8 times a day and jab him with injections 4-6 times a day. That was heartbreaking.
I don't think I slept all the way through the night for 5 years after his diagnosis. I was always worried his blood sugar would go so low during the night that he would lapse into a coma. There were many times I woke up in the middle of the night with an intuition that something with him was not right and I immediately went in to check his blood sugar. More times than not when I had awoken out of a dead sleep thinking about his blood sugar, his blood sugar ended up being dangerously low. This phenomenon freaked me out a lot. I worried that there would be a time where my intuition would not wake me up. Or that there would be a time where I woke up and decided to go back to sleep instead of getting up to check on him. That guilt and stress of that kept me up at night for years.
Fast forward to 5 years after diagnosis. My son went on an insulin pump at age 8 and we could all finally get some good sleep. The insulin pump helped us to regulate his blood sugar at night far better than what we had managed to do with injections. It is rare for him to be low in the middle of the night now, but if he is, his body usually wakes him up because he feels really unwell when he is low.
Now that my son is almost 16, I have many different concerns about him related to his Diabetes. My main concern is that HE IS A TEENAGER and teens don't want to be different, don't want their parents looking over their shoulder at every moment, and don't want to have to deal with having Diabetes. He is primarily responsible for his daily management now, it was a long and arduous transition from me to him. I served as his artificial pancreas all throughout his childhood. I would get his blood sugar numbers and decide how much insulin to give him or how much food he needed. I did the job a healthy pancreas usually does. I have since pretty much hung up my pancreas hat and given the job to him. It is really hard not to stay involved with it after doing it for so long.
During our journey with Diabetes, I have made many friends and done many Diabetes related things. My family is involved with JDRF (Juvenile Diabetes Research Foundation), we run a local walk to raise funds for JDRF. I also deliver a special care package to families of newly diagnosed children that live in my area. They send people like me out to these families to try to ease the pain and worry that the first few weeks after diagnosis can bring; to extend a hand of friendship and compassion.
As a parent, you would do anything for your child. When they are hurt you want the hurt to go away. When they are sad, you do or say anything to help them get over the cause of the sadness. When they have a serious chronic illness, it is devastating each and every day. You watch as your child bravely soldiers on despite all that he has to deal with. You want to take that illness from them, you want to make it better, and yet you can't. It is beyond frustrating.
The one thing that has evaded me though in all of these 12 years since his diagnosis is the feeling that I am making a difference in getting a cure to him. I am not a scientist, or a researcher, or a doctor. I wish I was. Maybe then I could take a more direct role in finding a cure for Type 1 Diabetes. It is an awful disease and it is especially awful for a young child to have to deal with it.
I want to know that feeling that I was instrumental in making him well.
It is frustrating thinking about how politics and financial concerns may shape when a cure becomes available and what that cure will be. The best funded researchers are more likely to get their discoveries into trials. The lesser funded researchers may have the best ideas but those ideas may never see the light of day without a large infusion of cash. It feels awful being so cynical, but I am afraid that is the reality of most disease research. Large pharmaceutical companies don't research, hold trials, and produce new drugs out of some desire to cure people, they do it to make money, lots and lots of money.
I recently saw the movie, "Extraordinary Measures," with Bredan Fraser, Harrison Ford and Keri Russell. It is the true story of the Crowley family; This family has 3 children; 2 of which have a rare debilitating genetic disease called Pompe Disease. At the time these children were suffering with Pompe, the life expectancy was 8 years, and there was no known treatment or cure for it at that time. Pompe is a degenerative disease of the muscles and organs.
In the movie, John Crowley, the dad who is a biotech businessman, decides he cannot sit by and watch his children die slowly of this disease. He contacts a scientist, who has published many articles and has been recognized as an authority that is working on a treatment for Pompe, but this scientist has very little funding to bring his theory to a working solution. To make a long story short, John goes to every extreme to convince this curmudgeonly scientist/doctor to work on making this treatment a reality for his children.
In the end, John Crowley was the one who was instrumental in getting a treatment made for his children. He never gave up and he helped thousands in the process. I really admire that man! His children are still alive and improving.
There are many brilliant scientists working on possible routes to a cure for Juvenile Diabetes. So far, though, none is very close to being proven. Daily management protocols change every few years with the advent of new/better/smaller/faster technologies. Still, even with better management, people with Type 1 Diabetes face a daunting daily routine and possible awful complications of they don't stick closely to their routine. Insulin is not a cure for this disease, it is only the liquid that is keeping people alive to receive a cure.
I can only hope that at least some of the people that are working on finding a cure for Juvenile Diabetes have a family connection. If you have a loved one that is dealing with this disease, nothing will stop you from seeking a cure for this disease, especially if this loved one is your child. That is how I feel, but since I am not in research or medicine, I will have to continue what I do and hope and pray that cure comes flying around the corner soon. I highly recommend the movie Extraordinary Measures for anyone that has a child with a chronic or life threatening disease. It is a movie about character, a parent's love and a parent's endless strength when it comes to protecting his family.
No comments:
Post a Comment