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! 

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.

Cameron, 4 (Anchorage, AK) | Type 1 Diabetes

CAMERON, 4 (Anchorage, AK) | Type 1 Diabetes
written by his mother, Jessica
photographed by Captured by Courtney Photography

Cameron is an amazing, spunky, energetic 4 year old boy! He is also a Type 1 Diabetic. He was diagnosed in April of this year (2016). 

I was 8 months pregnant with Cameron's little brother when we got the confirmation. My heart broke, but I was somewhat relieved to learn that there was a reason my baby wasn't feeling his normal self. 

Cameron has always been a quick learner. It never took him more that 2-3 times to try something, and he would have it down. This includes potty training. He was 1 and half when he was fully potty trained, even during the night. So, when he started peeing his bed 3-4 times a night, every night, we started to get really frustrated. Of course, our first thought was, new baby......he's just acting out. Then we started noticing how thirsty he was. 

At first, we didn't think anything of it because he's always loved his water. He'd prefer it over juice! But then he started downing it. Obviously with his constant thirst, there was the frequent urination. I would keep an eye on the color of the urine to make sure he was hydrated, not knowing that with Diabetes, the urine can be completely clear, but your body is still dehydrated. Come to find out, his body was urinating out all the sugar in his system. 

I was venting one day to a best friend of mine, and she said she knew someone, who like Cameron, had the same symptoms and was diagnosed with Diabetes. When I heard that, I did some research. 

Cameron had every single symptom. 

I immediately called and made an appointment with his doctor for an evaluation. The earliest we could get him in was 3 weeks away. 

One day, a Saturday morning, we (my husband and I), wanted to surprise Cameron by taking him to the movies. We were all dressed and ready to go, when we decided to stop at Walgreens and get a Glucose Testing Kit. 

Cameron had a really bad night Friday. We didn't really expect anything to come out of it, but decided to get one just in case. The awesome Pharmacist there did Cameron's test, because we had no idea what we were doing. When she took his glucose, the meter just said "Hi", which means his glucose was so high, it exceeded the reading the meter could give. 

We were advised to call the ER, and were told to immediately go in. Instead of a fun-filled day at the movies, we were in a hospital room trying to find out what was wrong with our son. 

Cameron was admitted from Saturday morning to Monday evening. He had Ketoacidosis, which is a life-threatening condition that leads to diabetic coma, and even possibly death. 

The amount of stuff you have to learn to keep your baby healthy is overwhelming. Cameron endures at least 4 finger pokes a day, and between 4-6 insulin shots a day...every single day. His carbs are measured out and accounted for at every snack and meal. 

Some days are "better" than others. It kills me when he asks, "Mommy, why do I have Diabetes, what did I do wrong to get it?" 

Nothing my Bug, you did absolutely nothing wrong at all. I choke back tears every time he asks me that.

Unfortunately, Type 1 Diabetes is brought on by a viral or bacterial infection. Cameron had some kind of virus, which was like a normal virus. It ran its course and he was fine, until about 2-3 weeks later when we started to notice his symptoms. He will have this his entire life. 

He is so brave. He is my Warrior ❤️

Bella, 9 (Anchorage, AK) | Type 1 Diabetes

BELLA, 9 (Anchorage, AK) | Type 1 Diabetes
Written by her mother, Bre 
Photographed by Dolce Vita Photography 

November 17, 2013 I awoke prepared for a relaxing Sunday. We had furniture shopping to do among other normal Sunday errands. Bella hadn’t been feeling/acting right for about 5 days. Nothing too terribly crazy…a little grumpy…eating me out of house and home…rarely complaining of stomach pains and drinking milk like it was going out of style. The increase in milk consumption had me a bit alarmed. My father had been a type 2 diabetic so I was familiar with the signs of diabetes. But this was different. That morning when I looked at her I could tell she had lost weight….rapidly. Her eyes had dark circles around them and she didn’t seem very alert. We headed out for the furniture store as I tossed around the idea of a sick Sunday pediatrician call in my head. While we were at the furniture store Bella found a bed that was set up and fell asleep on it…it was only 10:30am…this really set my alarms off. She was hard to wake and didn’t seem to be very aware of what was going on. Unbeknownst to me a worker at the furniture store had given Bella a cup of soda while we were paying for our furniture…pure fast acting sugar. Once we were in our truck I immediately called our pediatrician to let them know we were on our way….I knew there was something very wrong and I feared diabetes or cancer.

 

After dropping the boys off at home Bella and I headed to Providence. I remember it was a beautiful winter day and I could hear my own heart beat I was so nervous. She slept in my backseat. I carried her into the office and alerted the front staff of my suspicions. They immediately wanted a urine sample. My 6 year old happily gave them a sample and laid on the exam table. Shortly later a pediatrician emerged and confirmed she was “spilling” large amounts of glucose into her urine and also had large ketones (ketones are produced when there is not enough insulin to break down sugar in the bloodstream…when the body cannot break down the sugar it turns to fat and muscle). She instructed us to head for the children’s floor of the hospital….she would have to be admit and it need to be done quickly. Bella cried and I carried her…she was so weak that walking was not an option. The staff met us at the entrance to the children’s floor. What played out over the next few hours was what nightmares are made of. Bella’s first finger stick was too high for the meter to read (over 600 blood sugar)…so they wanted an IV draw for a lab sample. She was so combative and sick she fought like her life depended on it…finally I had to crawl behind her and bear hug her for the nurses to place an IV and retain the blood they needed. When the results came back I can still remember the nurse standing in the doorway saying “this is one for the books” she’s 1200. There was no reason in this world for Bella still to be conscious let alone talking and fighting like she was. They began slowly bringing her down with small doses of insulin and IV fluids, bringing her down too quickly could result in massive brain hemorrhaging and ultimately death. I had heard of type 1 diabetes but I truly knew very little about it. Over the next three days we were inundated with information about type 1 and what she would need to survive the rest of her life…it was overwhelming to say the least. She was released to us two days before Thanksgiving.

 
As we all know….carbs are a large part of most people’s Thanksgiving meals. I made all the dishes by scratch that year and figured out per serving how many carbs there were…we ate late….very late. Life wasn’t simple anymore. Everything was attached to numbers…and constant worry. How high was she? High sugars can lead to lifelong problems and internal organ damage. Let alone headaches, grumpiness, increased urination/drinking, etc. Or maybe she’s going to low? Low blood sugars can be very dangerous if not fatal….seizures and comas float through your head. At minimum lows can trigger stomach pain, weakness, lack of control of your extremities, and lots of crying. Every day is a new day….what worked the day before might not work today. And everything…I do mean EVERYTHING…effects blood sugars. Emotions, weather, sleep patterns, hormones, growth spurts, exercise, food, etc. With the diagnosis of Type 1 your sleep also goes out the window. How does one sleep when your child could drop dangerously low during the night and die? You now will spend your nights creeping into their bedroom to poke fingers and check blood sugars. Some nights it may be once, others may be an all night affair. Bella is almost three years into this disease. Each year brings an average of 2,800 finger sticks, 130 insulin pump site changes, and 36 CGM (continuous glucose monitor) changes. As a parent it’s painful to watch your child struggle on a daily basis with an invisible illness. Bella appears normal to on the outside (unless you catch her when she’s low). But her scars run deep. The daily roller coaster of unpredictable sugars take their toll.  

Type 1 diabetes can strike at any time to anyone regardless of age, sex, or race. It is the result of your autoimmune system attacking your pancreas and killing the insulin producing beta cells. There is no known cause and no cure. Overeating, poor eating, too much sugar, being overweight are just some of the stereotypes Type 1’s are hit with…all of these have nothing to do with the disease. Insulin is our lifeline not cure. Without Insulin Type 1 diabetics will die. Warning signs of type 1 diabetes that everyone should be aware of are extreme thirst, frequent urination, lethargy, weight loss, increased appetite, vomiting, stomach pain, fruity/sweet smelling breath, or heavy breathing. The symptoms can easily be misdiagnosed as simply a stomach virus or common flu. If you or a loved one are experiencing any number of these symptoms (doesn’t have to be all) please ask your doctor for a simple blood/urine sugar check…you may save a life.  Even with our daily struggles Bella is still a normal, happy 9 year old girl. She simply wants people to know that diabetes may be a part of her life but it doesn’t control it or define it.  We seek a cure and we battle each day…..She is my warrior kid! 

Resources :

www.jdrf.org    Juvenile Diabetes Research Foundation

http://www.t1dmodsquad.org/ Type 1 parent group

https://www.facebook.com/Sugarmom2/?ref=page_internal  Follow Bella’s story online!

Alexis, 11 (Anchorage, AK) | Optic Nerve Hypoplasia

ALEXIS, 11 (Anchorage, AK) | Optic Nerve Hypoplasia

written by her mother, Jennifer

photographed by Laura Stennett Photography 

I found out I was pregnant in the summer of 2004; I was nervous and excited. I thought about all of the things I would teach my daughter, and all of the things she could do. I never imagined all of the things she would teach me. I prayed for a healthy and beautiful baby.  I never dreamed how my world could be turned upside down.

When Alexis (Lexi) was born, they handed me a perfect little girl. She had a head full of curly black hair, beautiful lips and the cutest hands and feet I'd ever seen. She wasn't crying, and the hospital staff said she doesn't want to wake up, she wants to go back to sleep. Little did I know that was a sign of the journey ahead. When she finally let out a whimper, it was the most beautiful sound I've ever heard.

A few hours later we switched rooms, and the nurse turned on the light. Lexi was blue. She was rushed to the NICU, I had no idea why, and I wasn't able to see her until the next day. When I saw my little girl, she was hooked up to monitors and IVs. She had jaundice and was under UV lights, she couldn't regulate her body temperature, and her blood sugar levels were really low.

Her feet were poked for blood every three hours, and finally on day seven, she was diagnosed with low cortisol and was given cortisol replacement three times a day.  Hospital staff reassured me she would probably grow out of it and eventually be fine. Alexis was monitored for another three days before getting to come home.

I noticed she wasn't focusing on objects. At Lexi's two-month check up, the doctor shined a light in her eyes, and with a concerned look, she said I'm going to get another doctor. That doctor said, “I'm so sorry, but Alexis has no light perception, and she is blind.”

I felt my world come crashing down!  Thousands of questions flooded my mind: how did this happen, and what did I do wrong?

We were referred to a pediatric ophthalmologist, that doctor had a wait list of four months. Thankfully, they were able to see us within a month. This time she had light perception, and it was the best news. It meant she could see!

The doctor wasn't optimistic about how well her vision was "She will never be able to see color or shapes."  I didn't care; I knew there was hope! Alexis was diagnosed with Optic Nerve Hypoplasia/de Morsier syndrome. I was told she may never be able to walk or talk. Once again, I felt like I let her down.

As angry and sad as I was, I knew I had to be strong for her. No matter what, she was my little girl, and I loved every ounce of her.  We were going to get through this!

I never could have imagined how she was going to prove all of the doctors wrong! Alexis started receiving OT, PT, and services for the blind when she was three months old. Alexis has always been full of life; she is happy, loves to meet new people and loves anything that breathes, even insects! Yuck!

Lexi started to crawl when she was a year old and started to walk a few months after her third birthday. She started school when she was three, and she loved it! Lexi has hypopituitarism, which controls her growth hormone and metabolism, so she takes growth hormone replacement every night.  She is lacking thyroid hormones, and was diagnosed with adrenal insufficiency, which means she doesn't produce enough cortisol on a daily basis or in stressful situations.

Sometimes she has seizures when she gets ill due to her not producing enough cortisol. I decided I wanted to get Lexi a service dog, and with many peoples help, we were able to get Kona. She is in the process of being trained in seizure alert and cortisol detection for Lexi. It sets my mind at ease knowing I will be alerted if Alexis’ cortisol levels start to drop or if she starts to have a seizure.

Kona and Lexi are two peas in a pod. Two years ago, we found out about Camp Abilities, a summer camp for the visually impaired. Before then she didn't want to use her white cane, but once she saw everyone using one, she didn't mind using "Rosa."  At first she was scared, but by the second year, she stayed the whole week! Lexi has made many friends through camp, friends that will forever have an impact on her life.

I knew I always wanted to be a mom, but I could have never imagined just how much I needed her. She has blessed my life.  Lexi struggles everyday as much as she thrives. Life is what you make it, and everyday she makes me the proudest and happiest mom in the world. There is no cause or cure for kids with ONH. It occurs 1 in 10,000 births, and sadly is becoming the number one leading cause in childhood blindness. 

Jennifer said she has found this Facebook group for parents of children with Optic Nerve Hypoplasia to be extremely helpful in navigating their journey and finding support: https://www.facebook.com/groups/ONHSOD.parents.MAGIC/

Sophia, 8 (Anchorage, AK) | Congenital Heart Defects

SOPHIA, 8 (Anchorage, AK) | VSD, Aortic Stenosis, Interrupted Aortic Arch

written by her mother, Talia

photographed by Laura Stennett Photography 

March 6,2008. That's the day everything changed.

My husband and I had gone to my 20-week appointment a couple of weeks before, and learned we were having another girl. Our older daughter Gabi was so excited, but my doctor was concerned about the baby's heart.

“It probably wasn't a big deal,” they said. It was hard to tell because she was laying on her right side, and wouldn't turn over so they could tell how the blood was flowing in her heart.

Fast forward to March 6, when the doctor came in to look at my ultrasound. As the tech listed off parts of the heart, all she said, over and over was "abnormal." I layed there and cried and cried and cried. My baby had a broken heart and I didn't know what that would mean for her.

I called Gabi's pediatrician and explained the situation to him, and was referred to our amazing cardiologist, Dr. Scott Wellman. Dr. Wellman was what I needed. He was straight to the point. I was not having this baby in Alaska, and she would have open-heart surgery shortly after her birth. 

Sophia was diagnosed with a large VSD (ventricular septal defect), aortic stenosis and interrupted aortic arch.

A ventricular septal defect is a hole in the wall separating the two lower chambers of the heart. Aortic stenosis is a narrowing of the aortic valve opening. It restricts the blood flow from the left ventricle to the aorta and may also affect the pressure in the left atrium.

An interrupted aortic arch means a small section of the aorta is missing. Children with interrupted aortic arch cannot pump blood normally to the lower body.

The thing about heart babies in Alaska is that there are no surgeons here, so you have to fly your family out (if you can afford it, most insurances only pay for the child and one adult escort) and stay in hotels/hospitals until it's time to come home.

Anyway, the plan was made for me to be induced 2 weeks before my due date, where Sophia would then be transferred from UW Medical Center where I would have her to Seattle Children's Hospital, shortly after her birth. Well, Sophia didn't like that idea, two weeks before I was supposed to fly to Seattle, I went in to pre-term labor. We immediately went to Seattle, because this baby was coming, but really she wasn't. Jason, Gabi and I hung out in Seattle for two weeks until July 7, 2008, we made our way to UW for our sweet girl to be born.

 I can't continue my story without talking about the wonderful people that have dropped everything to come to Seattle and help Jason, me and more importantly Gabi, not once, but twice and three times do some. My mom, my grandma, my sister, my aunt Linda and uncle Mark and my aunt Tina. I will forever be indebted to the love and support you all have given us over these 8 years.

After having Sophia (on July 8, mind you) she was taken to Seattle Children's Hospital. I was discharged the same day I had her, and we spent a week with her in the NICU.

On July 15, 2008, Sophia had her first open heart surgery. They were able to repair her heart, but she still had a bit of a heart murmur. She was kept open for a few days because her heart rate was funky, so we couldn't extubate her or hold her. I would rub her legs or her forehead. I would talk to her…I spent literally every waking moment with her.

Then came teaching her to eat. She was fed via a nasogastric tube because she could not be breast or bottle fed until after her surgery. This meant I was pumping breastmilk for her, a lot. I was hooked up to my breast pump every two hours. There was so much milk I filled a 60-lb cooler for the flight home. We were discharged on July 31 and headed home August 1. I was relieved to be home. There were medications to give and lovinox shots to give for a blood clot that formed, but we were taking our baby home.

It was a tough few months. Sophia was colicky, and I called my mom crying all the time. It was so hard. Then came November 2008. Routine cardiology appointment we thought, but it wasn't. Sophia and I were medivaced to Seattle because her aortic arch had severe blockage and needed a stent put in. We've had a lot of surgeries for Sophia, but this one was the scariest. This is when I first realized that my baby could be really sick.

Sophia went back to Seattle at 18 months for a balloon angioplasty in that arch and was put on blood pressure medication after that appointment. (Sophia just turned 8 and is still taking blood pressure medication twice a day).

 For the next three years, life was normal…or as normal as life can be with a child with a heart defect. I still cried a lot, I still worried a lot, but life was good. Sophia grew in to her feisty, stubborn self and we continued to see Dr. Wellman every 4 months.

In November 2012 (I'm good with dates, I kinda hate it), Sophia went for her check up before we went to Disney World. We were told Sophia would need another surgery, another angioplasty and at some point in the next 6-9 months, she would need another open-heart surgery.

I was crushed. Seriously, another open-heart?! How can this be? But I marched on. I wasn't going to show my girls my fear. In January 2013, Sophia and I flew to Seattle for a quick angioplasty and in February 2013, Sophia had her second open-heart surgery.

I don't do well with them, at all. I don't eat, I get grumpy and I just want to take all of this away from her. I would take this all on myself in a heartbeat if I could. 2013 was also the year Sophia had her Make-A-Wish trip. It was an amazing time, and a break from the reality of Sophia's condition.

Fast forward to August 2016. Again, we're told that within the next year, our Sophia will have another open-heart surgery. I'm sad, I'm mad, but most of all I'm numb. Sophia understands this now. A couple months ago, as we were driving in Seattle, I came to the sad realization that the next time we would return to Seattle would be for another surgery. I think Sophia did too. She laid her head on my shoulder and asked me what it would be like. She asked how long the surgery would be, how long would we be in Seattle. She asked how long would she be in the hospital. Instead of explaining it to a 4-year-old, on their level, I was explaining it to an 8-year-old and she got it. And that breaks my heart.

While I could end this with how I feel, which is angry, terrified and so sad, I'm going to end this with a look into our Sophia. Anyone that knows Jason and I know that we don't define Sophia by her heart defects. We have only told her she couldn't do something once; she can't play soccer with how physical it is becoming. But other than that, the sky's the limit.

Sophia is a ball of sunshine and energy. She is the happiest and most stubborn person I have ever met. She is strong and compassionate and she literally has the biggest heart of anyone I know. You would never guess she has had five heart surgeries if you met her. I honestly don't know what the future holds for. I don’t know how many more surgeries she will have, but I know she's happy and she is very well loved.