Rylee

By Lisa Brodnax

Rylee Lyric Brodnax came into this world 4 weeks early on May 23rd 2008 due to complications during pregnancy. We had about 15 minutes of bliss with her before we noticed that her breathing didn't sound right. The nurses whisked her away to the NICU where they tried to bottle feed her because her blood sugar was low. It was then that they noticed that Rylee had a cleft palate and Pierre Robin (recessed jaw). Rylee remained in the NICU where we tried tirelessly to get her to eat enough on her own so that we could take her home.

 

The longer she stayed at the hospital, more problems were discovered. While discussing plans with her physician to have a gastric tube placed in her stomach, he decided to order some tests and X-rays to see if she had reflux and was possibly aspirating. While she did have reflux, what shocked us the most was, that they found that Rylee's intestines were completely rearranged, and her appendix was in her upper left side instead of her lower right side, as well. So, at just 2 weeks old, she had major surgery to correct the malrotation of her small intestines, as well as an appendectomy, and a gastric tube placement.

 

After 7 days of recovery we were ready to take her home. Only, when we arrived to pick her up from the hospital, there were nurses working on her and drawing blood. She had had blood in her stool. She was diagnosed with Pneumatosis and put on bowel rest for 7 days with a 50/50 chance of survival. Thankfully our little fighter pulled through. Before being discharged we had learned that Rylee has a chromosome 8 abnormality that is extremely rare. Developmental delay, hypotonia, heart defects, and cleft palate, are just a few conditions that come with her chromosome anomaly. So after 2 months in the hospital NICU, we finally got to take our baby home; not knowing what the future would hold.

 

To make a long story short, Rylee spent her first 4 years of life having surgeries, diagnostic tests, and other extremely painful procedures. But looking at her at the time, you would have never known it. She smiled through it all and hardly ever cried. We knew that she would probably never parallel the development of kids her own age, but we didn't care. Rylee's smile could melt anyone's heart. She is the sweetest, happiest little girl, but could also put most adults to shame with how strong and brave she is.

 

Then in December of 2012, Rylee became sick with what we thought was just the flu. She was never the same after that though. Over the next few months Rylee became extremely fatigued and lethargic. She stopped playing with her peers and toys, stopped talking with what little vocabulary she had to begin with, and worst of all, she stopped making eye contact and smiling. She would wake every night from night terrors, and could sleep all day if we'd let her. She was living in a fog. We had no idea what was causing such a regression and we had her tested for everything. The only thing we found was that her liver enzymes were slightly elevated. Then on Father's Day 2013, Rylee had her first seizure.

 

Immediately taking her to a neurologist, she was put on the anti-seizure medication, Keppra. Rylee already had hypotonia (low muscle tone), so this medication made her even more tired and extremely emotional. Over time she continued to get worse. After a 24 hour EEG it was discovered that 75% of the time while asleep, Rylee was having constant pre seizure discharges, making it impossible for her to transition into the deep, slow-wave sleep that our bodies need to rest, but most important, store memories. Having already tested for everything under the sun for what might be the cause of her seizures, the only other option was to start testing for mitochondrial disorders.

 

These tests can be extremely invasive and our little girl had already been put through so much. She has had 17 surgeries, has been put under anesthesia 36 times, and she is 6 years old! With there being no cure for mitochondria, we decided to only partake in non-invasive tests such as blood work, MRI's, and a retinal scan. Her MRI showed no change from the previous year, not even brain development. The worst, however, was that Rylee was diagnosed with retinal dystrophy and will most likely lose her vision eventually. With nothing else to lose and not wanting to experiment with more seizure medication, we reached out to Jason Cranford of The Flowering H.O.P.E. Foundation in May of 2014 to start her on cannabis treatment.

 

After only months on cannabis oil, Rylee has improved mentally, cognitively, physically and socially. She's making eye contact again, playing with toys and is interested in her peers. She's sleeping through the night more and has only had 2 night terrors since starting her treatment, and those were very early on. The best part of all and the one thing I will never take for granted again, is that she has her smile back. She smiles all the time and even giggles. It's as if the fog has lifted and she's seeing the world again.

 

Thank you Jason Cranford; for giving us our daughter back and for giving us hope. Hope that we won't have to say goodbye to our little angel any time soon. We've never met a person with as big of a heart as yours and we will forever be grateful for everyone at The Flowering H.O.P.E Foundation.  Next Story >