As a parent you never imagine how much your life can change in a single day, at one single moment. On April 13th, 2015 my youngest daughter Brylie was diagnosed with a rare but silent killer when doctors informed us she had Leigh’s Disease. As a mother my first instinct was to go to the internet, and it didn’t give me any promising answers. I was devastated to learn that Leigh’s Disease was rare, inherited by the parents, and the prognosis was very poor. We spent the next two years keeping Brylie as healthy as we could. We stayed away from crowds and sick kids, and she did the best she could in school.
Leigh’s Disease is a mitochondrial neuromuscular disease that is very progressive. It has no cure, no promising treatment plan, and can be very unpredictable. The disease affects mitochondria, which are organelle found in a large number of your cells. They work the biochemical process of respiration and energy production. Imagine trying to wake up every single day on a dead battery. It’s an impossible task; the disease is a daily struggle.
On August 29th, 2017 our lives changed forever. Brylie had not been feeling well. I could tell something wasn’t right because she was weak, disoriented, and just not herself. Brylie went from going to bed normally just like every night to suddenly being overly concerned with her homework. We did some reading to calm her down. She literally went from being able to read one second to not even knowing the words. Brylie knows her body really well. She looked at me and said, “Mommy I need to go to the hospital. Something isn’t right.” My heart sank, and I began tearing up. I knew I had to remain calm and just get her help. I woke up my wife, packed up a few things, picked up my mom, and drove to Children’s Medical Center Plano.
We quickly learned Brylie’s disease was progressing. Her lactic acid levels, potassium, and CO2 were critically high. We were then transported by ambulance to Children’s Medical Center Dallas where they continued to run tests and decided to do a lumbar puncture on August 31st. An hour after, she began having complications, then hours later she began having seizures. Brylie was quickly rushed off to the ICU, as the doctors were concerned she might have a stroke. No sooner did we get upstairs, she had one last seizure followed by a stroke. As her mother I was terrified! I begged for them to save her life, to do whatever it took to bring her back to me.
It would be eight hours before I could see my baby again. Brylie had a large amount of swelling on her brain, so when I could finally see her again she had an EVD (drain in the skull). She had to be intubated and kept completely sedated; I could only touch her tiny little hand. My sweet little 40lb brown-haired, brown-eyed girl couldn’t talk, move, walk, eat, NOTHING. Brylie had to have a g-tube placed because she couldn’t eat by mouth and she already wasn’t getting enough nutrition from the foods we had been feeding her. She also had to have a trach placed because the stroke had basically caused her airway to become floppy. We endured many struggles, four intubations, four extubations, and Brylie relearned to walk and talk, all while we were in the hospital.
During our hospital stay, Brylie’s diagnosis somewhat changed to M.E.L.A.S. or Mitochondrial Encephalopathy Lactic Acidosis and Stroke-like episodes. Wow! Now that is a scary thing to hear a doctor tell you about. Was I scared? A little, but I knew I had to be strong for my daughter. I knew I had to be on my toes at all times and be aware of her needs to avoid strokes or the progression of the disease.
Brylie is now on sixteen different meds. Some of them are vitamins and some are maintenance medications, but they are all doing amazing things. Brylie has been through so much in her short five years since diagnosis, but she continues to push. She has had plasma exchanges, seven lumbar punctures, and fifteen MRIs, as well as being trach dependent with a ventilator at night. She has re-learned how to walk, talk, read, write, eat, ride a bike, and live - all of which doctors said would probably never happen. I remember telling them, “Don’t tell me we can’t or won’t because one day we can and we will.” When a mother believes in her children, those children can do amazing things and accomplish phenomenal goals. I believe in my daughter. She is my hero! She is my reason for getting up each and every day along with all four of my other children. Without them I would not be the mother I am now, and I firmly believe Brylie will bring a new light to this disease.
Brylie gets up each and every day with a smile on her face, ready to face whatever battle the world has to offer. She lights up a room and can bring a smile to anyone’s face. Brylie can see things in people no one else can see. I love her hugs and personality. She gives the most amazing hugs! The Trolls movie is one of her favorite movies, she is always walking around saying “hug time.”
I must say Brylie has an amazing support system. She has a second mom that has been in her life every single step of the way. Her momma Jenn is her rock. Brylie gets up every single day and gives momma Jenn a hug and kiss before leaving off to school. Brylie has two older sisters and brothers who love helping take care of her. They have always been her biggest fans! Brylie has a rather large family, and without all of them and an amazing nursing staff she wouldn’t be where she is today. We love our Brylie!
Addendum:
A year after her hospital stay, Brylie returned with a special mission. You can read about Brylie's Pillow Project on the CBS local news website here: https://dfw.cbslocal.com/2018/09/11/brylies-pillow-project-hope-comfort/