Mercy Greene

Hi, my name is Shalea Greene, mother of Mercy Greene. My daughter was born October 5th, 2023- when she was a week old we found out through her primary care physician that she had Cystic Fibrosis. Life as we knew it would never be the same. Cystic Fibrosis isn’t a disease that takes a break. It affects our daily life.

Our sweet Mercy takes 30-40 pills a day just to eat. Her pancreas is insufficient. She must take pancreatic enzymes to aid in the absorption and digestion of food. People with cystic fibrosis have trouble absorbing fats which mean they have trouble absorbing nutrients like Vitamin A, D, E, and K- these fat soluble vitamins are crucial to normal growth and good nutrition. Mercy also takes a high dose of vitamin A, D, E, and K along with 1/8 teaspoon of salt (which I’ll explain later why). She also endures air way clearance for a minimum of 1 hour a day which consists of getting a nebulizer with mucomist an irritant to help break down and thin out mucus and albuterol that opens her air ways.. along with CPT (chest physical therapy) which is chest side and back patting in a specific pattern to help move out mucus. She has to do this every single day for the rest of her life and when she gets older she will have to wear a vibrating vest to assist with moving out mucus while doing her airway clearance treatments.

People with CF have mutations in their CTFR gene. which is supposed to create a protein that regulates the flow of water and chlorine in and out of the cells that line, the lungs pancreas, and other organs. However, CTFR mutations can lead to the production of defective proteins or no proteins at all. This results in thick secretions that can cause infections, damage and problems with the lungs pancreas and sinus’s among other organs.

Mercy is about 6 weeks old and we have spent 12 days total in the hospital. The grief and heart ache that comes with finding out about a life long diagnosis has affected our family in so many ways.. and even though modern medicine has come such a long way and has increased the life expectancy to on average 53 years old whereas 20 years ago most people didn’t make it to adult hood is huge but it’s a disease that like I said affects our every day lives. Even when she’s not sick she requires more than most children who don’t have CF.

As I said before Mercy has spent 12 days total in the hospital and is now being hospitalized and there’s a lot of medicines that she’ll be able to take when she 12-18 plus months old but because she’s so little isn’t able to. We are currently in the Pediatric Intensive Care Unit fighting parainfluenza that has turned into a bacterial infection in her lungs and being she has cystic fibrosis her fight has been more strenuous and difficult. She’s on BiPap which is the highest form of respiratory assistance aside from intubation.. and we’re praying it doesn’t go that far. Mercy is a fighter and many of her doctors and nurses are astonished at her fight- along with myself. I praise God for the strength and grit He has put in her.

I am raising money for her and for our family. As this has affected my husband and I the ability to financially make ends meet with hospital stays. There’s nothing I hate more than asking for help. More than anything we need support, encouragement, and prayers- but we need financial help and usually I would be too proud to ask or admit that. I placed a high number with no expectation to hit that but anything truly will help.

I’ll share even my faith journey through all this really just to get it off my chest.. it has been the hardest season of my life. Watching tubes being placed inside of her, seeing her be inconsolable and knowing there’s nothing I can do about it and feeling the guilt of not being able to take it all away and the fear of is she going to make it to tomorrow and so trying to take advantage of every moment I have. Trying to stay positive and hopeful when things don’t work out as expected. Trying not to blame myself, my husband, the doctors, or God in all of it.. and trying to stay strong and showing up for our family. Trying to show up for our other children I mean it’s just been a whirlwind of emotions- and we’re still in it but one thing I know is we will press on and we will break through because God is for us and no matter what stands against us and what comes at us we have God Himself fighting for us and sustaining us through it all. It hasn’t been easy to lean into Him I have had many meltdowns and I know my husband has dealt with his own fair share of grief and pain in regards to this all. I mean I didn’t expect any of this to happen being pregnant with her I had these dreams and desires and excitement about bringing a new baby into the world and all the cuddles and fun stuff we could do and just being able to enjoy our new baby girl and how quickly our world turned upside down where now we can’t do skin to skin with our baby because of all the tubing. And we’ve had some time to do that but currently she’s going through the worst of it and has experienced more than most in her life span.

I wasn’t sure how I would raise awareness about this or how to even. But this so far has been our story.. and I’m still learning and I know there is hope I know she can do more than most people who had CF years ago.. and her chances are a lot better than theirs. I know it gets better but we’re in the thick of it and it’s been hard.

above all pray for us, donate if you can, share this post and maybe send a message of encouragement even. Any or all would be much appreciated during this time.