GAGE, 6 (Wasilla, AK) | Type 1 Diabetes

GAGE, 6 (Wasilla, AK) | Type 1 Diabetes
written by his mother, Heather
photographed by Kaile Meyers Photography

At the end of July/beginning of August 2011, Gage began to drink a lot more water and soak through most of his diapers. It started out slowly and progressively got worse. I called his pediatrician every couple of days about these symptoms and she would tell me to keep on eye on him and let her know if his symptoms worsened. I had heard of juvenile diabetes but honestly didn't know someone so young could get it. I wasn't even sure what juvenile diabetes meant.

Over the next two weeks Gage kept getting worse. He became very lethargic, would panic if he didn't have a sippy cup near him, would soak through every diaper, lost 4 pounds, and began to have this very odd odor to his breath - every classic sign of Type 1 diabetes.

I was at a co-worker’s son's birthday party on August 21, 2011, and trying to get Gage to eat something. I didn't care what he ate; I just needed him to eat something. At one point, Gage stood in the middle of the party and wouldn't move any further. He just stood there, staring off into space. That moment is seared into my brain - the lost look on my baby's face.

That night my husband, Gage and I were sitting at the dining room table eating dinner when I looked at Gage and made the decision to drive into Anchorage from Wasilla to go to the emergency room to find out what was wrong. I had it in my head that it was a really bad virus or infection and we would get an antibiotic and Gage would begin to get better. My husband tried to get me to wait until morning because by then it was 7:30 in the evening and I had had enough. There was something seriously wrong with Gage and I needed to get him help.

I drove into Anchorage and we were taken to a room in the ER almost immediately. The doctor wanted to run some blood tests and decided to put an IV in just in case some of the tests came back with something and they would need to give Gage medicine. Gage was in his stroller and barely moved when they put an IV in his arm. I was sitting there twiddling my thumbs, waiting for some answers, when this nurse burst into the room, grabbed Gage's stroller and started wheeling him out of the room. I grabbed our stuff and ran after her asking what was wrong and where she was taking my son. She told me that he had Type 1 diabetes and was very sick and he needed to get to the NICU as soon as possible so they could begin giving him insulin. At this point Gage was in severe Diabetic Ketoacidocis (DKA) and almost comatose. He was 21 months old.

Diabetic Ketoacidosis is a life-threatening condition that develops when cells in the body are unable to get the sugar (glucose) they need for energy because there is not enough insulin. When the sugar cannot get into the cells, it stays in the blood.

I was very scared and had no idea what this Type 1 diabetes diagnosis meant. They admitted Gage to the NICU and began multiple IV infusions of insulin and saline. His Blood Glucose (BG) was 670 and he was in severe DKA. They had a nurse in his room for a full 24 hours. I asked why the nurse was staying in his room. She told me it was that he was not doing well and they wanted someone on hand in case things turned for the worse. It was almost 24 hours before Gage became responsive and would open his eyes. If I had waited till morning I believe I would have lost him.

The next three days were a blur of needles, information, people, supplies, finger pokes and more information. ANMC had just hired a pediatric endocrinologist and she happened to be touring the hospital before she started working and Gage was her very first patient. We are extremely lucky to have Dr. Lescher as our partner in this very confusing and scary journey.

I brought Gage home after three days in the NICU and began our new life with Type 1 diabetes. He has always been very good at letting me check his numbers and give him his insulin shots. I think he understood that, although he didn't like getting so many shots, they ultimately made him feel better. We were also very lucky that Gage was able to feel most of his lows and I was able to treat him before they got too bad. He has had five diabetic seizures due to lows, all while he was sleeping, so for a little over a year he slept in my room so that I would be more likely to hear him if something were to go wrong. After his fifth seizure I talked to Dr. Lescher and we began the process of getting Gage a continuous glucose monitor. That device has saved us from a lot of lows and a lot of dangerous high numbers. The first night Gage had it on the CGM alerted me to four different possible lows so that I could treat him.

It has been a little over five years since Gage's diagnosis and he is a growing, thriving, smart young first grader who doesn't let diabetes stop him from doing anything. He started using an insulin pump in August  and tells people he is part robot with his pump and CGM. He is very proud of both of his devices. I tell him all the time that diabetes does not make him different. It makes him special. I refuse to let diabetes rob my child of living as normal of a life as I can let him. He is a hero to his family and we are all very proud of this young boy who deals with a horrible disease but doesn't let it stop him from being who he is.

Austin, 8 (Palmer, AK) | Quadriplegic

AUSTIN, 8 (Palmer, AK) | Quadriplegic 

written by his mother, Tina

photographed by Dashing Life Photography 

It was a beautiful sunny gorgeous day on March 22nd, 2013. I headed out of town for my 40th birthday celebration and  planned to go snowboarding at a ski resort over 100 miles away from home. Everyone was getting excited for spring and the ice was finally melting. My son, Austin, was on his way back from a Friday night school play, with family and friends. While they watched the performance, the weather outside had drastically changed and turned into a winter storm, everything was freezing and snowing hard.  On their way home, an oncoming car lost control on the ice and collided with the car my son and friends were in. He was in a horrific car accident, the impact was sudden and brutal. 

My cell phone rang that night at around 10:30 pm. It was a call that no parent wants to receive. My healthy, ambitious, and energetic 5 year old son may be dead. Thankfully to the first responders were right down the road at another accident when they heard my sons accident. So they were at Austin's accident within minutes after it happened. They had to cut my baby out of a severely damaged car with jaws of life. It took around 10 mins to bring a pulse back. The local hospital told me they were working on him, to get him ready for emergency transport to the children's hospital. I rushed to that hospital waiting for him. It felt like eternity until they brought him in. Unconscious, my son's limp broken body lying there, not responding, my heart sank, I dropped to my knees, an overwhelming feeling of sickness washed over me. 

My heart never suffered so much pain until that night. Doctors told me to think about his quality of life, that he was brain dead. Clinging on to any signs of life in my baby. His injuries were substantial, including traumatic brain injury, but the worst was called Atlanto-occipital dislocation or known as internal decapitation. Only a few people in the world live from a spinal cord injuries like this. He broke his neck at C1 level and the spinal cord was  held together by only a thread. 

After being in the hospital for a week in a drug induced coma, he woke up with tubes coming out his nose and mouth the only way he could communicate was through his eyes, he would blink yes or no when we asked questions. He endured around 10 hours of surgery to repair his shattered spine. Neurosurgeons had to fuse his skull to his spine. Placing metal rods, plates, and screws to support  C1 through T5 vertebras. He was placed in a halo for 3 months which keeps his neck from moving by drilling into his skull to stabilize his neck and spine. 

Austin is a quadriplegic, paralyzed from the head down and can only feel his face.  He had to relearn how to talk with a tracheostomy in his throat, which is an artificial airway, and is dependent on a ventilator to breath for him continuously. Thankfully, now he can speak and eat without difficulty, but his diaphragm muscles cannot move air through his lungs. Early on, while in the hospital, he’d beg for me to help him and would scream and cry constantly in pain. His brain and spine were in constant confusion trying to send and receive nerve signals and that caused pain in his body that no medicine could help. He said his legs were burning as if fire ants were biting him and although I pleaded with doctors and nurses, but there was nothing I could do for my baby. I felt so helpless. I tried my hardest to comfort him at night when he would finally fall asleep, I would just lay there and bawl my eyes out wishing that I could trade him places in this unforgiving world.

Austin's determination and strength to fight made me come out of my deep depression and made me even fight harder for my little Angel. Before this accident, Austin was a vibrant little boy. Like most young boys he loved playing outside, going hunting and fishing, 4×4, camping, and traveling. Austin grew up on a beautiful farm with two brothers, one sister, and lots of animals. And in a split second, his life changed forever. 

It’s been almost 4 years since Austin has been living in a wheelchair, and I try my hardest to teach him to get out there, smile bright, and enjoy life. Quadriplegia is a life-changing condition, but it’s no barrier to living a full, happy, positive life. 

Austin has a very busy life. He's in 3rd grade and has had such a welcoming school. He has many friends and they are very involved in his life. He has physical/occupational therapy 3 days a week and 24/7 nursing care that helps me with his medical cares. He has such positive outlook and witty personality. This accident isn’t going to rob him of a great childhood and as a parent, you do anything possible to make sure your child will still have a long, happy, full and amazing life, he's the strongest person I know. He's my light, that has helped me through some very dark days. 

I worked in the oil fields for most of my adult life and it has allowed me to always provide for my family. Now I am a stay at home Mom, advocating for my disabled son. I am my son's voice, so I need to make it count. I handle more on a daily basis before noon than most handle in a week, and my advice to parents that are going through this is – Take care of yourself! You are the glue that holds everything together, and finding ways to keep yourself strong will help your child. Parents can feel so isolated but know there’s always support around the corner. I remember how angry I was when it first happened  and I encourage parents to find healthy coping skills from the start . After years parenting for a child with disabilities, you form routines and find the best ways to accomplish trying tasks, don’t gives up, there’s never just one ‘right’ way. But when you are going through it for the first time, everything is brand new it’s so overwhelming. 

Sleep seems like a far fetched dream, and friends and family don’t quite seem to understand your situation, but someone out there does! My baby has been through the worse, but he's alive. He fought hard, even with all odds were against him. Moral to this story never give up and believe. Let people hear your voice, ask questions, have preferences, and be an avid advocate. 

You can follow Austin's journey on his Facebook page:

https://m.facebook.com/AustinErvinHealing/