‘There’s something wrong with her!’ My mom looked at my triangular-shaped face.’: Woman with rare form of Dwarfism defies ‘grim’ life expectancy, ‘never gave up’

More Stories like:

“My story begins with two college students falling in love. Kelly met Tom while playing volleyball in gym class at Camden County College. My dad would always go up to my mom and try to talk to her and all she could do was giggle. One night, they were out with friends and happened to be at the same bar. My mom looked at my dad and said, ‘How old are you?’ He had gray in his hair already. He looked at my mom and said, ‘Aren’t you too young to be in the bar?’ The rest was history.

They dated for 10 months before my dad asked the big question. The two of them were in the Macy’s furniture department when he said, ‘I think it’s time.’

My mom looked at him, confused. ‘Time for what?’

‘You know, time to get married.’

And they did just that, 10 months later.

Courtesy of Megan Grannan

My mom was a NICU nurse and my dad worked two jobs, one of them at UPS. My dad would drive my mom to work and make sure her uniforms were ironed and ready for her every single day. This was their life for a while. But as time went on, they started to try for children.

My mom was having trouble getting pregnant. In order to do so, she needed the help of injectable fertility medicine. Simultaneously, they also started the process of adoption. She got pregnant from the first round of shots and then miscarried the baby. My mom told my dad that she was only doing this 3 times and then that was it.

Then they started the second round. Very quickly, she got pregnant again. Only this time around they told her there was a possibility of having one to six babies. Being a NICU nurse, she knew that carrying six babies at once would not have a good outcome. When the first doctor’s appointment came up, she found out she was not only indeed pregnant, but she was having twins! My gram was there with her when she found out this news.

As with most multiple pregnancies, my mom had to go to the doctor weekly to make sure everything was okay. The doctors quickly realized that one of the babies, myself, was growing a lot slower and smaller than my twin. The doctors were always thinking it could have been a case of twin to twin transfusion, a condition where blood flows unequally to twins in the womb that share a placenta, causing one twin to be smaller than the other. It was not.

My mom found out she was having a girl and that was my sister. Her name would be Erin Maureen Grannan, named after my mother’s paternal grandmother. They had no idea what I was going to be. I was always keeping everyone guessing, and am still today.

At 28 weeks, my mom was put on bed rest and hospitalized. My dad would go see her every day after work to make sure that she was okay and bring her food. She could not wait to get out of the hospital. And on Monday, February 8th, my mom found out her second baby was going to be a baby girl as well! I was going to be Megan Elizabeth Grannan, named after my mother’s material grandmother.

My dad came to visit my mom just like always on that Thursday night and they were predicting a bad snowstorm. He left because they had three dogs at home. As soon as he got home, he got a call from my mom saying that her water broke and he needed to get back to the hospital as fast as he could. The snow had already started and he was doing his best. Baby A, which was me, was ready to come out and see the world! Everyone else was not.

As they were giving my mom her epidural, the nurse kept saying, ‘It’s going to be okay, honey.’ Yet, it didn’t feel okay. All she could do was cry and hope my dad got there in time. And he did. He arrived right before the c-section. He barely made it because of the storm.

On February 12th, 1993, the first baby came out at 8:08 a.m.weighing 3lbs and 15oz. My mom looked at me and said, ‘There’s something wrong with her!” and started crying. Being a NICU nurse, she knew because of my triangle face that something was wrong.

My sister was born at 8:09 am weighing in at 5lb and 3oz. My mom did not get to see her because she was getting sick due to the medications. She told my dad to go with the babies and make sure we were okay. We were the first grandchildren on my mom’s side and it was a big deal. Everyone was coming to see us. My aunt Kim even ended up sneaking into the NICU when she wasn’t allowed.

Courtesy of Megan Grannan

The doctors came up to my mom and said they thought there was something wrong with me. She knew already. The following Monday, the geneticist came to talk to my mom about Metatropic Dysplasia. He gave my mom two choices of hospitals to go to, the Children’s Hospital of Philadelphia or A.I. DuPont Hospital for Children. She chose to go to A.I. DuPont because they are known for their orthopedics.

My mom broke out of the hospital but had to leave her babies behind. My sister had to stay in the hospital for 3 weeks and I had to stay for 5 weeks. My dad came and visited us every single day. I came home on a lucky day, St. Patrick’s Day. My mom put me in a white outfit with a shamrock pin. I ate every 2 hours, and my sister every 4. Being a nurse, my mom looked up the diagnosis and it was very grim. I would die before the age of two. Needless to say, mom was a mess.

My parents took me for my first appointment at A.I. DuPont at the age of 3 months to see the geneticist Dr. Charles Scott. He confirmed my diagnosis of Metatropic Dysplasia. In Greek, this means the body is always changing and each case is different. Dr. Scott referred my parents to Dr. William Mackenzie, an orthopedic doctor. I was diagnosed with a moderate case. I would go to see Dr. Mackenzie every 6 months and Dr. Scott every 6 months as well. Since my sister and I were preemies, we qualified for Early Invention and had OT and PT together. We weren’t hitting our milestones like we should have been.

Courtesy of Megan Grannan
Courtesy of Megan Grannan

Erin started walking at 15 months and I started at 20 months. Erin pushed me to keep up with her. I wanted to keep with her. But when she graduated out of Early Intervention, I remained in it. With Metatropic Dysplasia, I have scoliosis and kyphosis. That means my spine is an S-Shape and I am also leaned forward. My legs are also in a jockey’s position. I got fitted for a back brace at the age of three and then my parents got told that I am was going to be needing a spinal fusion. I was the flower girl in my aunt Kim’s wedding so my parents made the surgery for after the wedding.

This surgery fused my cervical spine C-1 and C-2 together. It was 10 hours long and my whole family was there. Now, I can be very stubborn at times and if I don’t like something then it isn’t happening. The hospital only had cherry Tylenol and I would only take the grape. My mom had to formally tell them, ‘She is not going to take that.’ They tried and nope. They went out and bought the grape. This was only the beginning.

After 3 days in the hospital, I got up and said I wanted to go home. That Halo and body cast did not stop me from doing anything. I wanted to go to preschool and that was a hard no. I was in this for 3 months. It was discovered after the surgery that I had lost the use of my left arm. To this day, I can use it somewhat, but not too much.

Courtesy of Megan Grannan

My teacher, Randee Mateo, has become part of my family. In Kindergarten, I was placed in the same class as my sister, but after that we were in different classrooms. During the school years, I struggled because I had surgery during the year. This pushed me back a lot and I heard on the playground one day that I was going to be held back in second grade. I came home crying and my mom took care of it. In the third grade, I started in the special education system. I didn’t like being labeled to begin with, and now I had another label. It didn’t really help that I am a very social person either!

As time passed, I just kept getting more and more surgeries, in turn losing more time in school. By the summer before sixth grade, my mom sat me down and said, ‘You’re going to sink or swim. I am not doing your work anymore.’ Parents fought long and hard for me at IEP meetings and made sure I was like everyone else. I danced, ice skated, and horseback rode. My parents made sure I was raised to fight for myself and stand up for myself. After that talk, I decided I wanted to get out of the special education system and that is what I did.

Courtesy of Megan Grannan

I was placed in a general education class actually with my sister. The teacher looked at me and said, ‘I don’t think you’re going to make it.’ I would get every word wrong on the spelling pretest. Yet, I eventually proved her wrong. The next big fight was that the insurance wanted me to get a wheelchair. I wanted a scooter instead. I got up and walked out of the room and my mom looked at the guy and said, ‘There you have it.’ I was the first child to get a scooter in the state of New Jersey.

I had a huge surgery the summer before middle school to straighten out my knees and hips. I was in a body cast all summer. I started middle school in a whole new district that brought more challenges. The aide wouldn’t help me, my mom was at a meeting every day because something new was always popping up. The principal said to my mom, ‘I have never seen anything like this before.’ She busted into tears. But, like my stubborn self, I was going to prove to them I could do it. And once again, I did!

I got a new a new aide and I thought, ‘What is this crazy lady going to do?’ Well, that lady, Ms. Mas, stayed with me all through middle and high school. We have memories together that we will never forget. Going through high school, in particular, was tough because I had my friends but I really didn’t have a crowd that I fit into. I was the manger of the girl’s basketball team and was in key club. I had friends but everything just seemed to fade away over time.

I wanted to drive but I knew I had to have a special car. I knew it would happen one day. I went on senior trip and to prom, but I was just ready to get out. I applied to colleges but didn’t get in anywhere, so I decided to go to Camden County College. I followed in my family’s footsteps. This is where I found out I wanted to be a teacher. I took different classes then went to an education class and that was it!

I had surgery every summer and went back to college in the fall. I did three years there and then transferred to Stockton University. On the first day of classes, I saw this girl who sat across from me and I wanted to say hi, but her friend talked to her the whole time. I realized that I had the same class with her the next period and that is when our friendship started. I asked her one day to push the elevator buttons and she said sure! That led to lunches and then we started talking about living on campus and she said why don’t you be our fourth roommate! I jumped at the chance.

Courtesy of Megan Grannan
Courtesy of Megan Grannan
Courtesy of Megan Grannan

My best friend, Danielle, made sure it was okay with the other girls and it was a go! I was joining an amazing group of girls, Shannon, Danielle, and Christy. Stockton redid my whole apartment for me and it couldn’t have been better. I had to tell the girls something that I was afraid to tell them. I was going to have a hip replacement the summer before I moved in. They were very supportive and understood. No one could plan for what was going to happen next.

I was going for my pre-op appointment and the hip was not ordered. I had a full blown panic attack. Everything was timed. All I could do was cry. They said it may be in by the following week. That was not the case. It was pushed back a whole month and during surgery my femur broke. I again burst into tears and was off my feet for 6 weeks and then started rehab. I made sure that I was going to be on campus. Everyone was telling me no but I was going to do it!

Two days after being released from rehab, I moved in. Those were the best two years of my life. I met my great friend Alex who was with me through all my education courses. Danielle is like a sister to me and I was only allowed to stay on campus if Danielle was there. I started my student teaching semester with a fixator on my leg. No one or anything was going to stop me!

Courtesy of Megan Grannan

I met Dr. White during my first semester at Stockton and she was the only education professor to say hello to me. I took her elective course and then followed her through my teaching semesters. I had her as my adviser as well. I had a professor who was always bringing up my disability and I went to her and I sat in front of her and just sobbed. She looked at me and said, ‘You can’t do this to me. I have seen you go through so much and I have never seen you cry.’ It was something this professor kept doing for me. Lifting me up. She’d ask me what I thought I needed to do and I said stand up for myself. She was always right.

Courtesy of Megan Grannan
Courtesy of Megan Grannan

She told me that if I was going to stand up for my students, I needed to stand up for myself first. I did just that. I filed a report against her. I completed student teaching and got to walk behind her at graduation. I walked the entire graduation. When I sat down, I texted her I made it. She texted, ‘Yes, you did.’

I decided to move on from Stockton and go to graduate school at Drexel University. I am doing my program in special education. I want to give back and show students what is possible.

Courtesy of Megan Grannan

It has taken a village to shape me into the person who I am today. I am forever grateful for everyone who has been part of my journey and those who are still on this crazy journey with me. I am determined to get where I want to be in life and no matter how many times I get knocked down, I will get up.

I have gotten so many amazing opportunities in life. Haley Paige from Yes To the Dress is making me a dress for a wedding I am attending. I get to meet so many amazing people, including fellow members of the Metatropic family.

Courtesy of Megan Grannan
Courtesy of Megan Grannan

I have had 26 surgeries to date and I know there are more to come.

Courtesy of Megan Grannan
Courtesy of Megan Grannan
Courtesy of Megan Grannan
Courtesy of Megan Grannan

Everything happens for a reason. Never give up!”

Courtesy of Allison Anne Photography
Courtesy of Allison Anne Photography

This story was submitted to Love What Matters by Megan Grannan of New Jersey. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

Read more stories like this:

‘This is dwarfism and I’m 99% certain the result will be fatal.’ There it was. A bomb. I couldn’t breathe, I couldn’t talk, I didn’t understand at all. She was perfect.’

‘Do you have a will?,’ my nurse asked. ‘No,’ I replied. ‘You need to get your affairs in order for your daughter, if anything should happen to you.’ What did this mean? I had failed her.’

Provide beauty and strength for others. SHARE this story on Facebook with family and friends.

 Share  Tweet

Queries: 94 Timer: 0.14035

Cache Hits: 2847 Cache Misses: 317