• Lindsey W Craig

Our Story

To be honest with you, my entire second pregnancy something just felt “off.” At that time, I blamed it on being stationed in Okinawa, Japan and going through very troubling anxiety, depression, and homesickness. My husband was awaiting orders for us to go back to the states, due to the worsening back pain and ongoing problems he has. The process was drawn out, with dates and orders changing every day, and the never-ending paperwork that’s required for practically anything and everything in the Military. I had just finished up my four year enlistment in the United States Marine Corps, so when the time came around for my husband to get out as well, to say we were ready for him to transition to civilian life and us start the next chapter of our lives would be an understatement.

My husband Rylan and I met in the United States Marine Corps in 2013. We were both Motor Transport Operators in the same unit, so we were super close and knew right away we were each other’s person. Rylan and I soon married in 2014 and welcomed our first son into the world May 2015.

The pregnancy with my first son Bentley was amazing and I didn’t have any trouble until my last trimester. I carried him for a very long 42 weeks, and was put on bed rest towards the end of my pregnancy. I was on my way to work one morning, when a really bad feeling come over me. All morning and throughout that day while working I didn’t feel that well, but brushed it off and blamed it on the “beautiful” side effects that come along with being 30 plus weeks pregnant. Finally, the workday was coming to an end and I decided to play safe than sorry and went to get checked out by my doctor.

That was the first time I truly experienced motherhood intuition.

The whole day I had a feeling something wasn’t right with baby and I, and I was right all along. Bentley was 32 weeks along at that point, and for the first 15 minutes in triage they couldn’t find his sweet little heartbeat. Finally, after full-blown panic in the room, being questioned by the Anesthesia Department, handled by every nurse on shift and being stripped and prepped for C-section, they captured a faint, slow heartbeat and things finally calmed down for a bit. I spent the next two days in the hospital getting monitored and getting a plan together on how I was going to safely carry until the due date. Weeks passed on bed rest at home, and my first real taste of frequent medical appointments for my child began. Due to the condition of Bentley’s heart, which was soon diagnosed as Fetal Arrhythmia and fortunately had gotten better over time, I had weekly appointments where I went and they carefully monitored Bentley’s heartbeat for a few hours to make sure he was doing okay. I did that twice every week until I finally went in for induction at over 41 weeks pregnant. The labor was terrible and it took me four days in induction to finally have him! I lost a lot of blood from hemorrhaging and became really sick from being in labor for so long after my water broke. Bentley was also really sick, and spent a total of 2 minutes in my arms before they swaddled him up and took him to the NICU where he was getting treatment for fluid in his lungs and low heart rate. Our journey was off to a really rocky start, but once we made it out of the hospital two days later, we began a beautiful and healthy life as a family of 3.

Life moved quickly for our family and before we knew it we were celebrating Bentleys 2nd birthday in our tiny apartment in Okinawa, Japan. Our time there is honestly kind of a blur when I think about it. While we were stationed there it seemed like time moved like molasses, but looking back I realize we were only there for such a short moment in our lives. In the spring of 2017 we had no idea that we would be leaving island so soon like we ended up doing. So, starting to try to have another baby was definitely something that was on our radar. We knew having a child oversees would be tough, but we were ready for it and wanted to give Bentley a younger sibling to grow up with close in age. In true Craig family fashion, things moved fast and by December of 2017 we were announcing the pregnancy of another little baby BOY on the way!

I was 18 weeks pregnant when we finally returned home to the states, and the relief I felt not having to deliver my baby oversees was exceptional. We decided that we would settle back into my home state, North Carolina, continue raising our family, and start College together. I quickly began getting all my doctors lined up, and went in for an ultrasound at 20 weeks. Luckily, the baby’s heart was fine, as this was a major concern of mine given past experiences. His vitals were good, he had ten fingers and ten toes, but something wasn’t quite right. Baby’s stomach was measuring significantly behind compared to the rest of his body. Once again, I was back to frequent monitoring appointments and weight checks to make sure baby was growing and healthy enough to continue carrying. By the time I was 38 weeks, the stomach size issue became less of a worry, and his body measurements and weight were all proportionate. To avoid any complications like my first pregnancy, my doctor gave the green light to induce at 39 weeks.

Declan’s delivery was perfect and everything I imaged it would be. I labored for only a short amount of time, and pushed for only five minutes. Everything was going so perfectly and I was beaming with pride and relief and so excited about getting this sweet boy home to meet his big brother. The first night was the start of many, many restless nights for us. The entire night and through the early morning, Declan was so cold. I mentioned it to my nurse on night shift, and she instructed me to do more skin on skin and that he would warm up eventually. After hours of skin-to-skin, blankets, thick jammies, and cranking up the room temp a few degrees, I couldn’t get Declan to warm up. He wasn’t latching to my breast and would hardly even open his little eyes. He was beginning to look lethargic and I noticed his breathing was very deep and forceful. The clock hit 7:00AM and it was finally time for shift change and my time to express my concerns with a new nurse. Immediately, she scooped Declan from my arms, ripped off all the blankets I had wrapped around him, and just watched him breathe for what felt like an eternity. I could see her eyebrows bow with concern, and I knew the next words out of her mouth were going to break me.

Extremely low blood sugar, low body temp, low oxygen and high heart rate kept Declan admitted to the NICU for a total of one week. During that week he also battled with dysphagia and his lack of ability to suck and use his mouth properly causing significant weight loss. He had a serious case of Jaundice and was so yellow he looked like an old school baby doll. His struggle with weight gain shortly led him to being labeled as “Failure to Thrive.” Three words that are a punch in the gut and made me feel like I failed my newborn baby. It's normal for babies to lose a little weight after birth, but at the rate Declan was losing, it was considered unhealthy and a sign that something wasn't right. Throughout the week, tests and labs were done and we were soon discharged with no answers as to why this happened to Declan in this first place. We finally went home, and that’s when things started to go downhill, and fast. After getting released from the NICU, we were instructed to immediately follow up with Declan’s pediatrician for a weight check and to see how he is doing out of the hospital. The first night was rough, he couldn’t latch to neither me or a bottle, and what he did manage to get down, would come right back up like the flood gates have opened. By the time we got him to his appointment, he looked more sick and very unwell, he was in pain and very uncomfortable, and nothing I was doing was helping him. We met his new pediatrician and she saw very many red flags and told me the chances of Declan getting admitted to the Children’s Hospital were very high now. She prescribed a medicine in hopes it would give Declan some relief and told us to come back same time the next day for a follow up. I took this opportunity back at home to pack, as I knew what was in store for Declan and I the next day.

We spent one long, scary, unpredictable and emotional month in the hospital where Declan went through every test, scan, poke, stick, lab and exam you can think of. Every single morning I waited in absolute terror for the medical team to make their rounds and give me the yes or no to the scary diagnoses they had predicted the day before that he might have. Every day it seemed like I was researching and digging up information on some rare disorder trying to find something that made sense for him and these things that were happening to his fragile body. A month in the hospital and we left with no diagnosis, no answers yet again as to why Declan was so sick. He went home with a NG tube in his nose to provide nutrition, a few medications, and a serious line up of appointments with a handful of specialty Doctors.

Adjusting to life at home after weeks and weeks of being in the hospital was rough the first little while. We tried our best to make things as normal as we could, even though nothing felt normal about what we were going through. Declan was very sick, every day was a struggle to get him comfortable or to a place where I felt like he felt content and okay. The NG tube didn’t last very long for Declan. He threw up everything he ate no matter if he received it by tube or mouth. So his GI team decided to take the tube out since he pulled and gagged on it constantly anyway, causing further frustrations for everyone involved.

This is when the “fun” started.

Formula changes, medication changes, weight checks, feed times, feeding positions, and lots of throwing up consumed Declan’s life. I had a book that I kept by him, and it went everywhere we went. I tracked every pee, poop, vomit, medication, and any unusual behavior or activity he had.

It was a constant struggle to get him out of the failure to thrive category despite our efforts to find and do anything we could to help him.

For just a little while, it seemed like stomach issues were going to be the worst of our problems.

More weeks and months passed and we received no new updates, no red flags on lab work, and were on a long waiting list for the genetics doctor where we live. At this point in time, we knew something was wrong, but didn’t know what and to what extent. I had my mind made up it was Cerebral Palsy, but still wasn’t sure, nobody was. The medical team we had at the time went through everything they said they could think of to find out what was going on. We were out of options and until we got in with the genetics department, there wasn’t much we could do but sit, wait, worry and pray he doesn’t have something that gets worse over time. Whatever it was, we prayed it was something we could manage, possibly cure, and be over with so Declan could finally live a healthy, typical life.

At seven months old, we had a pretty scary admission happen and it was the turning point of our journey with Declan. I was on the way to drop Bentley off at preschool when a Pediatric Neurologist in Charlotte NC called me and told me she heard about Declan (through our family pediatrician, they went to med school together) and that she could see him that same day and complete an EEG to see if she could pin point anything that could be causing all these issues and developmental delays. I quickly called my husband, went home, grabbed our emergency bags, and off we went.

A 45-minute EEG led to a 2 day EEG and we spent a total of 4 days in the hospital and once again like every other time, left with no answers or diagnosis. However, we did leave with the new knowledge that Declan has seizure activity in his brain. He shown no signs of having seizures, so this was a huge surprise to us and put us on edge even more. Now, not only were we juggling with weight gain, and nutrition issues, we were now on the lookout and high alert for any seizure activity he might have. The hunt for a name to put with this thing that was causing Declan all this trouble was top of our list. We needed to know so we could find the best treatment, resources and health care management for him.

Our hands were tied and we had no one else to rely on except a genetic doctor, and that appointment was months away.

It was about 7:00pm on a beautiful spring night in April, we were about to put the boys down for the night when my phone rang unexpectedly. It was Declan’s Pediatric Growth Specialist calling me on her personal cell phone that she gave me the number to the first time I met her. I guess deep down she always knew she’d be the one finding out first and making that phone call to me. A few months prior, this doctor ordered several labs for Declan. The labs took forever to process, some came back, some didn’t and no one was really concerned because everything that has been coming back has been negative or normal so far. We thought the genetic appointment was the only way we were really going to get answers for Declan, but blood work told us everything we needed to know that night. I knew the second I saw her number that this was going to the night we found out the diagnosis. She was scared to tell me, I could sense it. Her voice was shaky, and she told me to sit down if I wasn’t already doing so. She asked me if I ever heard of Angelman Syndrome before. My heart sank. I didn’t have any idea what Angelman Syndrome was, I had never even heard of it before. The emotions that overcome me were unreal. A chaotic mix between relief because we finally had answers, and devastation because we just found out Declan had Angelman Syndrome. She then told me “ He will live a normal life expectancy but its not curable and he will need assistance his entire life.”

Before she hung up the phone, she told me to visit the one thing that doctors usually steer you away from, GOOGLE.

What a phone call right?

My husband and I held each other and cried for one night. Just one.

We allowed ourselves to cry and be sad about the things Declan will not get to do in life. We cried about the hardships he is going through and will continue to go through with this diagnosis. We cried about the brother that Bentley lost when we found out the diagnosis. Declan and Bentley are still brothers, and their bond is special and stronger than any other I know, but this syndrome will rob them of so many things young brothers are supposed to do and enjoy together while growing up. We cried about our own lives that are forever changed and the new paths we must go down not just as parents, but as a couple and individually as well.

With the rising of the sun the next day came a fire inside of me to make things different for Declan and others like him. After learning about Declan’s diagnosis of Angelman Syndrome, I dove deep into it, learning everything I possibly could about it and how I could help Declan feel better and live a better life. I joined all the groups, pages, and completely submerged myself in the ins and outs of his new diagnosis.

Angelman Syndrome (AS) is a rare neuro-genetic disorder that occurs in 1-15,000 births worldwide. AS is caused by the loss of function of the UBE3A gene in the 15th chromosome. People who have AS may face many daily challenges such as, developmental delays, epilepsy, walking and balance disorders, gastrointestinal issues, and little to no speech. With a name as beautiful as Angelman, it’s no surprise that this syndrome comes with a few positives right? Individuals with AS are known for their bright smiles, and happy, excitable demeanor.

Declan smiled at me at only one week old, and even though life is hard for him, and he feels bad majority of the time, he always lights up the room with that smile and brings to so much joy to everyone around him.

He is our earth Angel.

Things were starting to head in the right direction for us. We finally had a diagnosis for Declan, which allowed us to properly advocate and treat him, and find the best resources and community. Declan was about to turn eight months old when we were able to get him seen by a GI surgeon. By this point, Declan had seen three different GI doctors, and not one could help Declan and provide relief for him and get him gaining weight. Weighing only 12 pounds, Declan was .31 percentile in weight and was labeled “failure to Thrive” once again leading the surgeon no other choice but to recommend a G tube placement and Nissen Fundoplication surgery for as soon as we could get him in. Normally this news would upset or worry parents, but for us it was considered a win, and a huge step in the right direction of getting our angel healthy and THRIVING!

The G tube was placed, the nissen was completed and Declan made it out of surgery and recovery beautifully. We were in the hospital for a few days, but went home ready and motivated to get Declan to gain weight! Weeks passed and while the G tube surgery presented its own new issues and side effects for Declan, it ended up being Declan’s saving grace. Declan went from 12 pounds to 20 pounds and has been there ever since.

The summer came quickly, and so did Declan’s prominent seizure activity.. He went from having none, to having multiple drop seizures a day. They have been gradually increasing and have gotten longer in frequency and length ever since. Much like our journey with feeding and nutrition, our journey with Declan’s neurological state has been complicated and hard to navigate. We have had several EEG admissions and still to this day we are fighting for answers and better health care for Declan. While Declan is extremely lucky to not be having full blown seizures and is able to recover from them on his own without hardly any struggle or complications, it still isn’t normal, nor is it healthy for him to be having 30-50 drop seizures a day even when he’s on two different seizure medications. We had to let go of Declan’s first neurologist because of the lack of concern on his part. During our last appointment he told me “Declan’s seizures are like a computer when it freezes up on you. It stops for just a minute and goes right back to normal activity when its finished so we shouldn’t worry because Declan will be okay, they do no harm.”

This wasn’t good enough for me and I immediately started the hunt for a new Neuro team. I knew there HAS to be someone or something out there that can help Declan get these seizures under control that inhibit nearly every aspect of his life. Finally a month ago, at the start of 2021, we got a referral to a new Neurologist. This Neurologist has not only years of experience in Pediatric Neurology, but she also has experience of working specifically with children who have Angelman Syndrome.

Since then, we have been navigating through the troubles that come Declan’s way. Weekly therapies, medical appointments, hospital admissions, staying on top of countless medications, and feed rates and times on repeat, every single day. At home weight checks, do his clothes look tight today, or loose? Do we need to add more water to his feeds today? When is the last time Declan had a bowel movement? How many seizures did he have today? How long did he wear his braces today? How much therapy did we squeeze in? These thoughts constantly run through my head day and night and they are impossible to shut off.

This is our life now, and that’s okay.

Declan wakes up every single day ready for what is in store for him. He fights so hard, and never gives up. He is the strongest little boy I have ever met.

Declan is the main one affected here, and I know whatever me or the rest of the family may feel, he feels ten times more.

I remind myself of this often because its important to remember that he didn’t bring this on himself. This is just something that happened to him; to all of us for that matter and nothing could have prevented it from happening. It is my job to take care of him, fight and advocate for him any time I need too.

Angelman Syndrome may have taken away his ability to speak, but it will never take away his voice in this world.

Declan is almost 2.5 years old now and although he is still below the 1st percentile in weight, battling with daily high drop seizure counts, he is thriving and improving every single day. Declan is constantly defying the odds that have been stacked against him all his life. He continuously breaks the barriers that are placed on him in all aspects of his life and I feel so blessed that I am the mama that gets to witness such beautiful miracles every day. We get to celebrate all the moments, big and small, no matter what they are. Each day is special and unique with Declan and we are continuously learning and growing together.

Our little family of four has been through a lot, and has learned so many things together the past three years. Our bond is stronger than ever and we have found out what really matters most to us, each other. Life hasn’t been easy, and we know the road ahead will continue to have obstacles that we must face and tackle together. We will forever be growing, adjusting and learning day by day.

I am excited to watch my family grow and do great things, whatever their level of abilities may be.

Though our life looks a bit different than most, I hope that you’ll enjoy a further peek inside my family life on Instagram. We like to keep it real and I like to share the ins and outs of our life with Declan and Angelman Syndrome. Although we struggle and life isn’t always rainbows and butterflies, its messy and crazy but its beautiful and worth it.

Instagram and social media as a whole have been an outlet and a source of guidance, and positivity for our family. We have met a community of people who aren’t just friends anymore, but considered family. Because of social media, I know I am never alone in this fight, and neither are you my friend.

Join us as we share our journey, advocate, fight for inclusion, and raise awareness not only for AS, but all other disabilities as well.

Not many people know about these things, until it happens to them personally or someone close to them.

If more people know, the more that can potentially be done about it.

Knowledge is power, and if sharing our story and journey can help people, then I will write, share, and advocate for Declan and others like him till my very last breath.

Scientists believe that Angelman Syndrome has the greatest potential of being cured when compared to other neurogenetic disorders.

Today, scientist are so very close to finding a cure for humans with Angelman Syndrome, and have already reversed symptoms of AS in the mice models in the lab! Much of the pioneering and critical research being done has been funded one dollar at a time from parents, families, loved one, friends, and generous people all around the world. The research being done has led to revolutionary clinical trials that hold the potential to treat and ultimately CURE Angelman Syndrome. Fundraising is a big part of the Angelman Syndrome Community and since diagnosis day we have been committed to doing and raising whatever we can to help Declan and others angels like him!

To donate, please visit

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