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Meet 2018 Hero Lilly-Anne Bryan!

Lilly-Anne Talene Bryan is 4 years old.  On her 4th birthday, May 10, 2017, her nurse practioner found a mass in her belly during a routine check up. After many test, she was diagnosed 10 days later with Neuroblastoma and sent to St. Jude. She is stage 3 high risk.  We have been at St. Jude since diagnosis. She has done 6 months of harsh chemos, a bone marrow transplant, we are currently finishing up 22 days of radiation and are getting ready to do 6 more months of chemo.  She has developed some minor hearing loss as well as lung problems secondary to the chemo treatments. Lilly-Anne is a fighter and she is our Hero!!

Written by her mother - Lacey

 

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Meet 2018 Hero Avery Benjamin!

Avery Joy Benjamin is a 17 month old diagnosed with adenosuccinate lyase deficiency, infantile spams, myoclonic seizures and cortical visual impairment. She began having seizures at 3 months old and had severe developmental delay that sent her to be tested for genetic conditions. She was the then diagnosed with Adenosuccinate lyase deficiency which is a rare disorder that only 100 people in the world have ever been diagnosed. With a grim diagnosis, she has not let that stop her from working so hard every day doing PT, OT, and ST to break barriers. We continue to be amazed at her progress. We do not what holds the future, but we do know WHO holds her future and we are enjoying every smile, laugh and living every day to her fullest!

Written by Abbey Benjamin - mother of Avery Joy

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Meet 2018 Hero Jace Chapman!!           

 

Jace Chapman is a 17 yr old who was diagnosed with a rare chromosomal mutation resulting in severe mental retardation, a abnormally formed heart, and severe seizure disorder. Jace is a rarity considering that he is the only living child in the world with this specific chromosomal mutation, however, Jaces seizure disorder is the one component that jeopardizes his life on a daily basis. Since birth his seizures have caused him to stop breathing when he has a grand mal seizure. He is currently on 5 different medications in attemp to control his seizures but unfortunately the medications are not working and are beginning to cause other major medical problems. On April 16, 2018 he will undergo surgery to remove the entire temporal lobe of the brain in attempts to stop his seizure activity. Although this type of surgery is risky the surgeons cannot guarantee it's effectiveness. We are putting this in God's hands and are praying for his will to be done. Jace is only a small special boy but to us he is our HERO.
Written by his mother Mary

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Meet 2018 Hero Kinsley McCauley!

 

Kinsley Descha’ McCauley was born at 26 weeks. She weighed 1lbs 15oz and was 13 1/2in. long. Her first two weeks of life went off without a hitch! But unfortunately she did get very sick. After 10 days of antibiotics and holding her food it was clear that Kinsley was not getting better. Her doctor made the decision to transfer her to a larger hospital in Shreveport. Upon arrival we were informed that she had NEC (necrotizing enterocolitis) and would need surgery ASAP. My husband and I were devastated but little did we know that was just the beginning of our long road. During surgery they discovered that her condition was worse than they originally thought. 50% of her small intestines was removed and that wasn’t even all of the sick bowel, they left some in there in hopes that it would heal. Exactly one week after surgery Kinsley dehisced, which essentially means her incision split open. I’ll never forget when the doctor looked at us and said “this is a turn for the worse.” We were told that if Kinsley survived this there was a very slim chance that she would be neurologically normal. Luckily God had different plans. When kinsley’s wound opened up it made its own osteomyelitis and after that things picked up for her. Growing kinsley’s feeds were extremely slow but we did make progress. Finally it was time to reconnect her bowel and while they were doing that we made the decision to put a g-tube in as well due to her slow feeds she had to be on them 24/7. After surgery Kinsley had a severe allergic reaction to the antibiotics and she broke out in blisters all over. Once that cleared up she had her 3rd surgery which is where they put in a central line, because she would be coming home on TPN. Two days after that surgery she had her 4th surgery to remove a picc line that had adhered to her saphenous vein. FINALLY WE WERE CLEARED TO GO HOME!!!!! Yes we came home on TPN and continuous feeds but that did not stop Kinsley from just striving! She is the happiest and most well rounded child I have ever met (and yes I know I am biased!) Her central line should be coming out sometime this spring and we are ecstatic! Kinsley has hit every developmental milestone right on time and shows no signs of delays. She is truly an amazing little girl that can light up anyone’s day! View full-size Download

Written by Brittany-mother of Kinsley

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Meet 2018 Hero Ava Jowers!

Ava Jowers is a 5 year old who was born with a rare form of Muscular Dystrophy called Congenital Myotonic Muscular Dystrophy and a secondary diagnosis of Autism. She was born via emergency c-section on January 29, 2013.  She was born limp and lifeless, the neonatal team started to work on her immediately. She was taken into the NICU for further evaluation and care. Over the next several hours, we were told that Ava had hypotonia, poor suck reflex, bilateral club feet, and was overall weak. We were unsure what was wrong with our precious angel and whether or not she would survive. She spent the first two months of her life in the NICU and wasmisdiagnosed several times during the first 6 months of her life. 

Ava was diagnosed with CMMD on July 4, 2013. CMMD is a life threatening, muscle wasting disease that weakens all of the muscles and major organs of the body. She has been hospitalized several times a year with chronic respiratory issues and pneumonia. She requires continuous pulse ox monitoring, bipap, oxygen, inhalers, and breathing treatments. She also requires a cough assist and CBT vest treatments daily to help her cough productively. She also requires suctioning for excess secretions. The disease also affects her facial expressions and vision. She is prone to cataracts at an early age. She is nonverbal and herprimary mobility is her wheelchair. 

Ava is a strong and determined little girl. She never ceases to amaze us. Throughout the five years of her life, she has endured many trials and defied many odds! She refuses to give up and battles this disease courageously! Ava has taught me more than I can ever teach her. She is an amazing warrior and truly my hero!