My baby girl came into the world 5 weeks early and right on time. We didn’t know but Brynlee had a bowel movement and had a blockage causing her to struggle to breathe. I knew something was wrong and that she was trying to come. I went in to labor and delivery and was told that I wasn’t in labor and they even gave me two shots to stop me from going into labor. That same night I came home and went to bed and woke up to my water breaking. By the time I made it to the hospital she was almost here. She was delivered exactly 46 minutes after we arrived at the hospital. No time for an epidural. The doctor made it into my room just in time to catch her as she came flying into this world. Her belly was distended and I could see something was wrong. So many people were working on her and then they told me they would have to take her from Lexington Medical Center over to what was Palmetto Health Children’s Hospital at the time. It’s Prisma Health Children’s Hospital now. They took my baby. This was the day I found my inner Mama Bear. Just two hours after giving birth I informed the staff that I would be leaving with or without filling out their paperwork which got them in there quickly. My sweet Mom who had been in the room for all of this rushed me to the other hospital to my baby just in time for me to see her before she was taken back for the first of what would be so many surgeries. That day they opened her intestines and placed an ostomy bag. It wasn’t until 4 weeks later she was diagnosed with Cystic Fibrosis and we were told that’s what caused her problems at birth. We were also told that had she not come when she did that she wouldn’t be here. I knew then that my sweet Brynlee Marie has a huge important purpose here in this world. Brynlee spent 42 days in the NICU shocking the doctors and proving them wrong. Since her very first day of life she has been fighting. Fighting to breathe and fighting to live. I quit keeping count of surgeries and procedures so I could focus on memorizing each of her meds and treatments. Brynlee has been hospitalized so many times most of which are at least 2week stays. Right now with no current antibiotics Brynlee’s base is 28 pills per day along with hours each day several times a day being spent doing her vest treatments and nebulizer treatments. Brynlee turned 7 in August and she is in the 2nd grade. I used to tell everyone that she doesn’t know she is sick because she really is such a happy girl and is so full of energy. These days however she knows that her friends and siblings aren’t taking pills and doing treatments. She knows that no one else is having to take pills before they can eat. She knows that she has something called Cystic Fibrosis. She knows that it’s easy for her to get sick and that even the common cold can and most likely will land her in the hospital. She has a port and knows what it is and what it’s for. She knows we have to have it flushed every month and even helps remind us to put the numbing cream on it before we head to her port flush appointments. She knows to get away from anyone who is coughing or showing signs of being sick. She knows she has a lot of appointments. She is still the happiest and sweetest little girl. Her smile and personality will brighten any room. She still has so much energy but will admit when she is getting tired now. She loves everything that 7 year old little girls love. Before Brynlee was diagnosed with CF my family and I had no idea what it was. We are now 7 years in and we are still learning and taking it one day at a time. What we do know is that there is not yet a cure for it. We know that thanks to fundraising and research the average life expectancy has greatly increased. We know that new medications are coming out that are treating underlying cause of CF. These medications are showing great results. Brynlee isn’t old enough yet to take the newest one but with funds and research that could change soon. If you can, please consider making a donation to help Brynlee and others with CF. Every little bit helps.
For too long, cystic fibrosis, a rare, genetic disease, has robbed people of tomorrows – progressively limiting their ability to breathe and tragically shortening life. There are approximately 30,000 Americans living with CF. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease.
I walk for them. Will you join me and support my Great Strides fundraising goal?
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short.
By walking with me in Great Strides, you can help accelerate the Foundation’s pursuit of new therapies and provide vital support to meet the needs of the CF community.
Please support me!
Your participation will help us get one step closer to ending this terrible disease. Let’s make CF stand for Cure Found.