JASTEN, 14, Anchorage, AK | Suicide Survivor
written by his mother, Michell
photographed by Laura Stennett Photography

Jasten was born into a very loving family and was extra loved by his Omi (my mother). They were best of buddies and together as much as possible. His Omi taught him so many things: cooking, crafting, making cakes, and basically anything he wanted to learn. They had an annual fishing trip every year with just the two of them and would take off for a weekend of camping and fishing. They came home with the best memories and the biggest smiles. Every holiday we would have at Omi's house. She was always trying new things to make each holiday special. She introduced him to the world of motorcycles. He even learned to pull himself to his feet using his 3ft tall toy motorcycle.

On July 16, 2015, Jasten and I found his Omi after she completed suicide. That day his world was tipped upside down. His best friend was gone, but the last images of her wouldn't leave his mind. He felt so much guilt thinking if he would have just told her one more time he loved her or spent more time with her, she would have known how loved she was and would not have taken her own life. His anger, guilt and pure sorrow ate at him. He was angry all the time and started lashing out in so many ways: punching things, writing on the walls, failing school and overall losing all desire to be successful. He was having nightmares and couldn't sleep at night, which caused falling asleep in class. His teachers were getting frustrated and his write ups were stacking up.

He had been going to counseling for the Post Traumatic Stress Disorder (PTSD) he was diagnosed with but nothing seemed to help. I was losing my little boy right before my eyes and I had no real idea how to get him back. As his mom, I knew I had to do something but how do I help a young boy that has all the pain and sorrow I do and not being sure how to process it myself? I just knew I had to help my little man learn to grieve but, more than that, I needed my little boy back.

I reached out for every bit of help I could find. We met with a couple of therapists and he was diagnosed with depression. I had to make the terrifying decision to try an anti-depressant. Luckily, the first one we tried worked well and within weeks, I saw a little glimpse of my amazing son. After about a month, he came to me and said, “Mom, I feel like the old me.” And at that moment I knew I had done the right thing and I knew eventually we would be okay. Even with the antidepressants, he still couldn’t fall asleep or stay asleep and it was greatly affecting his performance at school and in sports. We decided to try Eye Movement Desensitization and Reprocessing (EMDR) therapy to help with the flash backs and nightmares. I was also using this therapy method. EMDR is a very interesting type of therapy (link below) and many, including myself, have a hard time believing it will work but after a few sessions he was telling me how it worked for him. Counseling, EMDR, antidepressants and sports saved my child.

With that combination, I started to see huge changes. He was sleeping through the night, was able talk about his Omi and share fun memories, and getting back to the kid I knew before his Omi died. Jasten is now a freshman in highschool, completely medicine free, a strong competitive wrestler and doing well in all aspects of life.  He will tell you out of a very bad tragedy, very good things came. He wouldn't be who he is today if he wouldn't have gone through all that he did.

We honor his Omi often. Every year we attend the out of darkness walk, Nami ribbon tying ceremony, and we send balloons with messages every holiday. We go on an annual fishing trip to our favorite spot to celebrate her on the anniversary of her death. She loved Hawaii and the last trip she went on, she sent tons of pictures of sea turtles on the beach. The sea turtle has become a symbol of remembrance and everywhere we go we bring home a sea turtle from our trip for her memory shelf. We hope to go to Hawaii soon and take some of her ashes with us to spread in a place where she found peace.

Alaska has the 2nd highest rate for suicide in the nation. There was an alarming number of 200 in 2015 alone. Each year the numbers keep growing. Please reach out for help if you are having suicidal thoughts and remember your life matters. If you have suffered a suicidal loss, there is help and support groups out there to help you as well.

Nami Tree Tying Ceremony TBA

https://www.namianchorage.org/

Out of Darkness Walk September 15, 2018

https://afsp.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=5789

International Suicide survivors Day November 17, 2018

https://afsp.org/find-support/ive-lost-someone/survivor-day/

Suicide Hotline

http://www.suicide.org/hotlines/alaska-suicide-hotlines.html

EMDR Counseling

http://www.emdrhap.org/content/what-is-emdr/

Bridges Counseling

https://www.google.com/search?q=bridges+counseling+anchorage&ie=UTF-8&oe=UTF-8&hl=en-us&client=safari

American Foundation for Suicide Prevention

http://afsp.donordrive.com/index.cfm?fuseaction=donordrive.event&eventID=4382

Anchorage Chapline Suicide Survivors Group

http://www.suicide.org/support-groups/alaska-suicide-support-groups.html

Bereavement Support for Adults

https://alaska.providence.org/services/b/bereavement-council/bereavementsupport

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Noah, 10 months, Anchorage AK | Congenital Heart Defects (TGA)

NOAH, 10 months, Anchorage, AK | Transposition of the Great Arteries
written by his mother, August
photographed by The Birth Photographer 

Being pregnant was the best feeling. Sure, I was sick for weeks on end but I didn’t care because I knew that meant my baby was healthy. This was our “rainbow baby” (meaning a baby that is born following a miscarriage, stillbirth, neonatal death or infant loss) so I embraced every “annoying” thing that came with pregnancy. When we went to the ultrasound at 20 weeks we found out we were having a boy. He was very active. We tried everything possible to try and get him to turn for pictures of his heart but he wasn’t really having it. After an hour-long ultrasound, the technician decided they had all the pictures they needed.

At our 32 week ultrasound, our baby measured average on everything. Three days before my due date, we were just unloading our last load from moving before we decided to take a dinner break. I was walking outside and my water broke! Ten hours later, my beautiful boy was born. He was a healthy 7 pounds 10 ounces and we named him Noah Charles.

A few hours after he was born, I had mentioned to one of the nurses that his hands and feet looked pretty purple still but she assured me that was pretty normal in newborns since the blood disburses to other more important parts of the body first. About five hours after he was born, a different nurse noticed his dusky color and she didn’t like it at all. She asked me to follow her to the nursery with Noah just to check on his oxygen levels. His oxygen levels were in the 70’s and even with oxygen would only go into the 80’s.  We got my husband and brought Noah down to the Neonatal Intensive Care Unit (NICU). I was hoping that he just had a small amount of fluid in his lungs and that’s what was causing this.

When we got to the NICU, they said they do two procedures when babies are having trouble bringing their oxygen levels up: draw blood and do an echocardiogram (ultrasound of the heart). As we were sitting there waiting for an answer, a nurse came up to us and wanted to know if either of us has family in Seattle and Portland where the hospitals were. We didn’t know what she meant because we hadn’t been informed Noah needed to be moved. She got chewed out for it by her superiors but we weren’t mad or upset about it.

Dr. Wellmann came over to where we were sitting and explained to us that he found something on the echo. Noah was born with a heart defect called Transposition of the Great Arteries (TGA) and he also has a hole in the lower septum of his heart (VSD). He said they would have never known he had a heart defect because babies born with heart defects are usually severely underweight. TGA is a defect in which the arteries of the heart are switched so the oxygenated blood just goes in a circle while the deoxygenated blood goes back out to the body. This required an operation called an Arterial Switch. 

Dr. Wellmann was awesome and let us know that after his surgery, Noah could live a relatively normal life. We were still scared. How was it possible that this perfect child had a defect of any kind?

That night Noah was flown out to Seattle on a medivac. I had family that was able to meet him there so he wasn’t alone; I couldn’t ride with him and I couldn’t go on a commercial flight alone. My husband and I flew out a few hours later. I was so excited to finally see him but he definitely looked different, which they warned us about. He was extremely puffy from the sedative he had on the plane and he had a breathing tube in. I probably cried the hardest after they took out his breathing tube because he tried to cry but it was muffled and his voice was hoarse. It was hard seeing him that way. The next few days were just the waiting game until his open heart surgery. The cardiologists at Seattle Children’s Hospital actually found that Noah had what was called Dextro-Transposition of the Great Arteries (D-TGA) so his surgery might be about eight hours long instead of the projected six!

Noah was born on Friday and his surgery was scheduled for Monday. That day we were worried and everyone seemed to be fairly silent. We had planned on waiting to get him baptized until he was at an age to ask us, but we had a priest do it right before his surgery. I never knew it was something I actually wanted to do but I bawled the entire time. The priest was so nice and checked on Noah throughout his journey.

Soon, the date of the surgery came. They told us to say our goodbyes and give him love. They gave us the option of walking back with him but I couldn’t do it, so I gave him a teary kiss instead. It was too hard to walk back with him, let alone wait for the surgery; that was the longest six hours of my life! We were supposed to get updates throughout his whole surgery but something happened and we never received anything. I finally had my husband ask someone because, at about five hours or so, we had heard absolutely nothing. They told us that he actually did great and they were just working on stopping bleeding before they stitched him back up. In that same moment, we found out that my great uncle passed on. I believe that possibly his life ended so Noah’s could continue. A little while later, the heart surgeon came to talk to us and told us that Noah did amazing. The relief that we felt in that moment was probably something we will never feel again.

The first week or so was trying to get him to breathe on his own without the breathing tube. They would have specialists come in and try but it wouldn’t work and they would have to put it back in. Eventually, he got the breathing tube out but still had to have an oxygen cannula (tubes delivering oxygen through the nose). Once his breathing improved, the next few days were spent trying to get him to eat. As soon as he would latch on to me or the bottle, he would fall asleep. He really excelled in everything that was expected of him eventually. After almost two weeks of being in the hospital, we were released. He was on two diuretics and we had to fortify my pumped milk with formula to help him catch up on gaining weight. He only needed these things for about a month. After that, he was just a normal baby. He caught up on gaining weight going from the 8^th percentile when we got out to being in the 80^th percentile now at 10 months old.Before his surgery, we were told it was very possible that he could experience developmental delays. I know he is my first and only child but I truly believe that he is very smart for his age and he is hitting all his milestones when he is supposed to achieve them. 

He is 10 months old now and he is a huge blessing to anyone with whom he comes in contact. If you didn’t know him or his story, you wouldn’t know that he had a rough start. Noah can put a smile on anyone’s face. I am so glad he’s a happy baby after everything he went through. I am a firm believer that a stress free pregnancy equals a happy baby so maybe that’s the reason his condition went undiagnosed. Since we have had a baby with a heart defect, we have a higher chance of our other kids experiencing some sort of heart problem, so I will have to see a specialist for my future pregnancies.If there is anything I want people to take from this, it’s to make sure the ultrasound technician gets a good picture of your baby’s heart. If your baby isn’t cooperating, maybe try rescheduling. You could even go as far as asking for a pulse oxygen level on your baby once there to make sure their oxygen levels are good. I didn’t realize until this all happened that 1 in 125 babies born are born with a congenital heart defect. That statistic means this is very common but I never thought it would have happened to me, nor anyone I knew. Thank you for taking the time to read Noah’s story!

HANNA, 11 (Kodiak, AK) | Kabuki Syndrome, Epilepsy, Autism

HANNA, 11 (Kodiak, AK) | Kabuki Syndrome, Epilepsy, Autism

written by her mother, Kathy
photographed by Breanna Peterson Photography 

Even after 11 years, I remember the day Hanna was born so freshly in my head!

We had a little bouncing baby girl. She was 5 pounds at birth. We came home from the hospital a day later.

Boy, were we in for it. Hanna decided to only sleep in in 20-minute intervals. She also didn't eat correctly…barely eating half an ounce at a time.

When Hanna was 6 months old, we started receiving referrals to different doctors frequently…it seemed almost weekly. We live on an island, so having to travel to Anchorage each time came with its own set of challenges.

By the time Hanna turned one, she wasn't even crawling, let alone walking. We were referred to Infant Learning Program, and then occupational therapy and physical therapy.

As first time parents, we were overwhelmed. Then, out of the blue, Hanna started having seizures. An emergency trip to the pediatric neurologist was then needed, where Hanna was diagnosed with epilepsy.

Well, things didn't end there. We were referred to Seattle Children's geneticist. That trip came to last about 3 years back and forth. They did test after test, then say she had this and that. But I didn't agree!

Finally, on the 3rd year, Hanna’s test came back and she was diagnosed with Kabuki Syndrome. All these weird names were just thrown at us. To us, it was just a name. We loved our daughter dearly just like any other child.

Kabuki Syndrome is a rare, multisystem disorder characterized by multiple abnormalities including distinctive facial features, growth delays, short stature, and other varying degrees of difficulties.

Boy, we have been through the ringer. Just last August, we saw an allergist. Hanna has suffered allergies all her life. But we were there for 6 hours and found out that Hanna has no antibodies, which produce B cells. Hanna would get sick with everything so easily. We also found out that we had to learn to give Hanna weekly IGG infusions (immunoglobulin therapy). We wondered what else could be thrown at us!

Immunoglobulin therapy is the use of a mixture of antibodies (immunoglobulins) to treat a number of health conditions

Hanna is now 11 years old and has defied many odds! We love her to the moon and back we always tell her so! She receives services through Hope Community Resources, has weekly occupational and physical therapy, and we are part of an online Kabuki Syndrome support group.

Hanna has many diagnosed syndromes, but that doesn't stop her, or makes us love her any differently! She is our Alaskan Warrior child! 

BROOKS, 4 (Anchorage, AK) | Rare Disease Day 2017

BROOKS, 4 (Anchorage, AK) | Rare Diseases: NOMID/CINCA

written by his mother, Holly

photographed by Laura Stennett Photography 

Today, when you meet Brooks, he is normally a happy, curious, funny, energized little human. But it hasn't always been this way. For the past 4 and a half years, we have been in and out of many doctors’ offices trying to figure out what was preventing Brooks from developing. 

It started at birth. Brooks was born a seemingly healthy boy; joining his two older sisters. I noticed immediately that something was very different, and there was something in me that told me to keep a close watch on him. As time went on during his first year, with the tremendous support of his pediatrician, we started down the path of evaluating his symptoms and trying to determine possible causes for what we were seeing -  transient hemipeligia, significant swelling in limbs that would come and go, urticarial rashes followed by swelling so significant it left bruises, delayed motor skills, allergies and intolerances to many foods, inability to sleep, and the most haunting to me was that look of pain in his eyes. 

With the help of many local and Seattle-based providers, we worked over the years to diagnose and identify a treatment course to get Brooks back on track with his peers. We had a number of frustrating dead ends, and after what seemed like endless testing and a lot of opinions at age 2, no one really knew what was going on and we were left with knowing something was very wrong, but no name or treatment path.

A big milestone was reached just after Brooks' first birthday. At 53 weeks old, he intentionally clapped his hands together for the first time (coordinated bi-lateral movement!). Even with significant therapy, he did not crawl or walk unassisted until 17 months (therapy was weekly from 4 months old, regression of skills documented). 

Brooks did not sleep more than 2 hours in a row until he was 56 weeks old when he slept for four hours. We thought he could not sleep due to pain - stomach or body (legs?), but had no real way to determine what caused the pain, or how much pain was he in. Brooks also has some vision challenges and has worn glasses since August 2014. The glasses have greatly helped Brooks' development in his ability to move through space. He continues to wear glasses today, and has undergone a number of focused testing to determine just how much, if anything he can see out of his left eye. It is clear his vision is significantly impaired in his left eye due to inflammation damage.

We met a doctor who had recently read a research paper on NOMID - Neonatal onset multi system inflammatory disease - also known as CINCA (chronic infantile neurological cutaneous and articulate syndrome). Brooks was nearly 3 years old when we learned of this very rare disease. We followed down the path for a possible NOMID/CINCA diagnosis with more blood samples during a flare up, x-rays of his knees, and a skin biopsy of the urticaria. With the results of these, and in consultation and a review of his neurological history with National Institute of Health a clinical diagnosis of NOMID was given, and we began treatment with Anakinra. 

Within 3 days of starting treatment, Brooks was a completely different child – he began playing for more than an hour at a time – where before he could handle only 10 – 20 minutes of activity before needing to rest. He could walk almost double the distance, although it was tough because he lacked the core strength, form and practice, but he seemed to want to move more. He had more energy, and he was able to be more organized in his motor movements. It was apparent to everyone around him – his parents, caregivers, and doctors who knew him well. It was amazing progress, and we have continued to see the same progress since then. 

I am grateful for the NOMID Alliance (http://www.autoinflammatory.org/) and for the research done by their organization in coordination with NIH. Without the past research and publishing of papers on NOMID, we may not have had a diagnosis and begun treatment, and Brooks might still be in a place of significant delays and inability to move freely. 

Brooks got fitted for and received ankle foot orthotics (AFO's) around age 3 and a half, and until then we had NEVER seen him run. 20 minutes after putting them on, he was so fast he slipped right by me and out the door of the office! We call the AFO’s his ‘fast shoes’ and I will never forget the look on his face of pure joy and freedom. 

We are so thankful for the research and treatment that others pioneered before us, and even though Brooks is doing well today we worry it won't always be this way. As he continues to grow he will need different treatments as the disease progresses, and while the medicine works now, it might not always work. That is why research is so important to us - there is much to be learned about rare diseases like what Brooks has - and we hope there is continued focus on his disease and others like him in the research community.

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.