our kids

Skylar

For Skylar something as simple as a cold could prove to be fatal.

Hi, my name is Paula Myers I have 2 children, Skylar who is almost 14 and Wyatt who is 9. When my daughter, Skylar, was 4 months old she got really really sick. We spent a month in MUSC with Dr.’s telling me they didn’t know what was wrong with her and if they didn’t find a cause she wasn’t going to make it. After an abundance of prayer and myriads of tests, she was diagnosed with PCP Pneumocystis Pneumonia.

It was very touch and go. But what was the cause? How did my baby girl get this? Initially they told me she had AIDS. I knew they had to be wrong so I challenged that diagnosis. I fervently insisted that they do further testing. Finally my persistence paid off and they ran additional tests. The new tests revealed that she did not have AIDS but instead a very rare immune deficiency disorder called Hyper IGM Syndrome that is generally only found in boys. She had to receive IVIG every month and we took every precaution possible to ensure that she did not get sick. Something as simple as a cold could prove to be fatal. She was in a "bubble" until her immune system improved.

When she learned to walk we noticed she was a bit wobbly. As a first time mother, I thought it was normal but as time went on her balance did not improve. She would bounce off furniture and walls and her Grandfather jokingly started calling her his Little Pinball. With more practice and no improvement we found ourselves back in the doctor's office looking for answers. Orthopedist, neurologist, and pediatricians were all basically scratching their heads. No one had an answer. Finally at the age of 2 we found a doctor who put the puzzle pieces together... the lack of balance and the low immune system were related. Blood work was sent to UCLA. The findings were not good. They told me they believed she had a rare disease called Ataxia – Telangiectasia. It was an entire year and many test before they were able to confirm that diagnosis. They said the best way to describe this horrible fatal degenerative disease was to think about the worst possible cases of Cerebral Palsy, Muscular Dystrophy, and Cystic Fibrosis then roll them all into one. They told me she wouldn't live to see 10. I was devastated. I cried for days. How could my sweet precious baby girl have this awful disease?

Life was difficult. Our days and weeks consisted of doctor's appointments on top of doctor's appointments. Finally we got to a point where Skylar was stable and things got a little better. Along came Wyatt and our little family was doing okay. Then, unfortunately, her father made bad decisions in life and became addicted to drugs. Not wanting my children to be in that environment, we parted ways. I was now a single mother and I had no idea how I was going to handle this on my own... but I did it.
In 2010, Skylar was diagnosed with Chronic Lung Disorder. This meant more hospital stays and I was basically living at MUSC. One week there and one week at home as I still had a son at home that needed me. It became our new normal. Thank God for my sister who helped me care for him and helped us financially since, given the circumstances, I was unable to work. Then I met an awesome man who I fell in love with and who fell in love with my family despite it all. He treats my kids as if they're his own. Things were looking up. We now had some financial stability and hospital stays were slowly decreasing.

Then in October of 2016 my worst fear happened. Skylar was diagnosed with cancer. She has Large Diffused B-Cell Cancer. She had to start chemo. My world fell apart. And in the midst of it all my mother passed away. Why, why us??? What did we do to deserve all of this? Shortly thereafter, she contracted the Rotavirus and her weakened immune system couldn’t handle it. My baby was very very sick. She spent a month and a half at MUSC. And as if she hadn't been through enough, she was then diagnosed with Diabetes.

Earlier this month, on his birthday, the love of my life was in a horrible car accident and they had to amputate his left leg. Once again our financial stability has been shattered. Money is extremely tight for my family. We can only hope and pray that he is able to get disability and health insurance. Things have been extremely rough for my family and me. But through all of this I am very grateful for everything I have and that God has given me the strength to keep pushing on. I have learned that my family is stronger than I ever thought it was.

Thanks for reading my story about my family. We appreciate your help and prayers.
Gratefully,
Paula Myers