Paging the real life “Dr. Gregory House,” are you out there? What I am about to share with you is not out of a fictional television drama or a made for TV movie, this is my family’s daily life. My name is Haley Diaz and I am 13 years old. I’m the eldest child in my family, the lucky one because I am the only one that has any memories of dad ever being well. But, I know the pain he falls asleep with, the fear of never waking up, which of course is the pain we all face. Our countless, “I love you’s,” will never be enough for me. Those whose lives are changed by gastroparesis (delayed gastric emptying) know it can be a pretty challenging illness to live with. Others affected by rapid gastric emptying (dumping syndrome) suffer an equally horrible experience. Each one of these is really bad, but what if you had to live with both and when they combined they produced a third even more violent, permanent, life threatening condition that had no fix? That is what my dad has to live with every day, condition number three.

My 36 year old dad Tony is not a diabetic. My dad has a damaged vagal nerve in his stomach. Because of this, his body has a short circuit. His stomach is paralyzed part of the time and then when it feels like it, it just dumps all of the contents, sometimes several meals, into the small intestine without warning at any time of the day or night, making his pancreas go crazy!

And so the chain of events begins. A huge dose of too much insulin is released bringing on dad’s condition number three, a potentially deadly or vegetative state encounter with hypoglycemia if he doesn’t beat it. The worst part is that while you or I can have chocolate or soda to bring our low blood sugar back up, an ounce of sugar at this point can tip the scale for my dad and mean life or death. He used to respond to glucagon emergency shots for a few years that were $100 each, but then his body got so tired of his pancreas asking his liver for sugar, that his liver just stopped supplying it.

On Halloween night 2007 my mom had to rush him to the hospital after 7 shots in one day. My dad had emptied all of the sugar in his body and was not responding. In ICU that night my mom was told to not go home for a change of clothes, because my dad was going to die. But of course mom being mom, she called home to say everything was going to be okay when in reality, from his hospital bed, dad was already telling her what he wanted his funeral arrangements to be like. I have no idea who is stronger – dad for what he endures daily or mom for keeping it all together. It would’ve been easy for him to have given up, but he didn’t. He kept fighting for 45 days in ICU enduring countless painful and horrible tests including a 3-day starvation diet to rule out an insulin tumor he didn’t have. After being released he had to go back to the hospital on my granddad’s birthday which was a Thanksgiving Day because even with his IV at home, his sugar was still out of control. If that were to happen now, I would be in charge of my 5 month old brother and my eight year old sister, because all of my grandparents have now passed away.

There is no cure for my dad, only a very strategic diet that my mom has created over the years by educating herself on the glycemic index and trial and error that doesn’t always work. There isn’t one specific doctor out there that we know of that fully knows what to do for him and some have even refused to treat him. Today he doesn’t even have insurance and we can’t get him covered due to the rule about pre-existing conditions. Our only treatment is the diet and IVs at home for a few days to fill his liver back up every few months that we have to pay for. This is hard to afford now because both of my parents have lost their jobs and dad has been denied Medicaid and Disability because there is no official diagnosis for what he has and again, people don’t understand it.

You have to live through one of dad’s episodes to appreciate the time it takes him to recover. Sometimes it takes days, and he could have two in one week which makes it all the more worse. The lack of sugar to his brain makes him weak, foggy and forgetful; he’ll be talking to you fine and then BAM, he gets frustrated because he looses his train of thought and gets tongue tied at least once a day. You can’t say anything to him about it either because I know he gets upset, you just have to wait for him to remember.

Whenever my dad’s face goes pale my stomach churns. Crying gets me nowhere. My feet run for the glucose meter while my mind is two steps behind. How low is he? Will he make it through this one, will the liver respond? The meter beeps, “4...3...2...1…” and my heart pounds. Will it come up alone? Do I hit him with the needle? Do I have time to call 911? Where’s mom?!! And this can happen anywhere, the grocery store, the mall, at one of my cheer competitions or even when you least expect it in the car behind the wheel bringing me home from school. We almost never eat out anymore and family vacations have become a thing of the past. For awhile mom was going to sleep with all of her clothes on, shoes and all in case she had to run out of the house in the middle of the night with him. My mom knows that when my dad’s sugar is low, there’s no room for seconds wasted. The only device that can warn us of an upcoming drop is called a Dexcom Seven^®, but we can’t afford one.

And so I leave you with this one question. How far would you go to save the life of the one you love? Would you mortgage your home to the point of foreclosure to get medical attention your insurance company won’t cover? Would you leave your kids with relatives to travel miles and miles seeking the help of any expert or faith healer who said they could save them? Would you bank your new baby’s stem cell cord blood in the hope that someday, someone, somewhere out there in the universe can fix that person’s damaged nerve? We can answer yes to all of these because my family has done them all. We love my dad and refuse to let him go down without a fight, regardless of the sacrifice.