Ella Web - Our 2019 Honoree

Ella Webb is a 10 year old little girl who was born with a “click in her hip”. Although, Ella had many other unknown complications, that was the first thing her pediatrician noticed when she was born. At Ella’s six month check-up, she was diagnosed with severe torticollis, and began physical therapy twice a week. At nine months old, Ella had her first seizure, and had over thirty more by the age of 4. That was the beginning of Ella’s story. Her parents and doctors soon realized that Ella had significant developmental delays, feeding issues, and lots of respiratory problems. With every specialist appointment, her parents were told of new problems and concerns about their always-happy baby.

After hearing the word “syndrome” yet another time, it was decided that Ella would have genetic testing. Ella was diagnosed with a severe gene deletion in chromosome 9P, which led to her having two muscular syndromes, Nemaline Myopathy and Inclusion Body Myopathy. Since the ninth chromosome controls many of the body’s core muscles, including the muscles in her face, neck, and chest, Ella stayed sick with pneumonia, had severe speech delays, and lacked the strength to sit, stand, and walk. Because myopathies tend to be regressive, Ella’s parents were told that if she lived past the age of 3, she would most likely be in a wheelchair by age 10. Little information is known about Ella’s syndromes, and at the time of her genetic testing, there were only two other known cases of the exact same gene deletion in the world. One is a Chinese girl and the other is an Indian boy, making Ella the only known American child to have these two myopathies. Ella Grace Webb truly is a special girl! Since there is no treatment or cure for such a rare diagnosis, Ella’s parents were told to be thankful for each day with her, and to give her as full a life as they could. They learned early on that with every setback, Ella was able to overcome because of the strength she had gained from all of the therapy she received. She has been in therapy every week since she was six months old. Those are the activities that Ella does to support her disabilities, but she is involved in other activities to support her interests. From a very early age, Ella loved water, so her parents put her in swimming lessons. Learning to swim gave Ella the opportunity to strengthen her core and improve coordination, which led to her ability to ride horses and take ballet. Ella began horseback riding lessons at age 4, and continues her Sunday lessons where she can now lope and gallop her horse without any assistance at all. Ella may have been born with severe muscle weakness, but God has given her talents that strengthen her muscles through swimming, horseback riding, and ballet. She loves to dance in a special needs class at Statesboro School of Dance each week. Ella Grace Webb is a special girl who brings a smile and hug to everyone she meets. She continues to grow and learn new things each day, and her family is so blessed to see her continued progress and watch her grow.
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Merritt Moore - Our 2017 Honoree

Merritt is our energetic 2 (almost 3!) year old. She was born with a genetic disease called Cystic Fibrosis (CF). CF is a chronic and progressive disease that cause the body to create thick and sticky mucous in the respiratory system, digestive system and sinuses. There is currently no cure for CF, only a long list of treatments and preventative measures to sustain Merritt’s health. The mucous in her lungs is a breeding ground for bacteria, so our goal is to get out the sticky mucous and prevent respiratory infections.

Every day, Merritt has 2-3 breathing treatments. These “tweapments,” as she calls them, take 30 minutes each. She inhales albuterol while wearing an inflatable vest that shakes her lungs, encouraging mucous to be coughed up. Before she received her vest, we used percussors to “beat” her chest and back! When she is sick, we try to squeeze in 4 treatments a day. Some of those must occur in the middle of the night, but she is very compliant and sleeps right through them! Merritt also receives numerous nasal sprays throughout the day for her sinus issues. These sprays soothe her irritated nasal passages and helps keep them flushed out to prevent sinus infections. Merritt’s digestive system is affected the most. She has pancreatic insufficiency, which means her pancreas doesn’t function properly. Her body is unable to absorb nutrients and digest food. To combat this, she has to take pancreatic enzymes with every meal. These enzymes break down food for her pancreas and allows her body to grow. Enzymes come in capsule form and Merritt swallows them through a straw! She takes between 10-11 enzymes each day. In addition, she receives reflux medication twice a day to help reduce reflux and chronic vomiting. CF requires a high-calorie diet full of fats and proteins. Unfortunately, Merritt has many feeding difficulties and she is unable to orally consume the recommended 1500+ calories per day. She received a gastrotomy tube (g-tube or “tubie” as we call it) when she was one. She is fully dependent on her tubie, but thankfully it has allowed her to grow and thrive. Merritt currently receives weekly feeding therapy to combat her oral and sensory issues. It’s a slow process, but seeing her chew and swallow salty and fatty chips is a win in our house! Merritt has a special CF team in Augusta that includes a handful of specialists: pulmonologist, gastroenterologist, otolaryngologist (ENT), dietician, respiratory therapist and the MANY amazing nurses that work alongside each of the specialists. We rotate seeing this crew each month and log in many hours during CF clinic visits. Our days are filled with a routine of breathing treatments, nasal sprays, enzymes, tube feedings, and rewards for compliance! As Merritt’s disease progresses, we will add more medications to her routine. One day we hope for the medicine that cures this disease! We are incredibly thankful and humbled that Merritt has been chosen as this year’s honoree. Our family looks forward to this amazing event each year! We can’t wait to see each of you on the dance floor!
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Laura Donaldson - Our 2015 Honoree

She has multiple birth defects which include; CP, Spina Bifita, Complete, Bilateral, Cleft Lip and Palate, Absence of Corpus Colosseum, Seizures, Developmentally Delayed, Neurogenic Bladder, Colostomy and Feeding Tube. When I was 4 months pregnant with Laura I was told at one of my regular prenatal visits that she wasn't measuring correctly on the growth scale. My gynecologist sent me to a specialist where I found out that my baby had multiple problems.

With their high tech ultra sound the Dr's were able to see that Laura had a cleft lip, and palate and the hole in the palate actually went straight through to the brain leaving Laura with the middle of her brain missing. The Dr's said Laura wasn't formed correctly from the very beginning and I should of had a miscarriage. They told me I had the option to terminate my pregnancy at this time, but I never even considered it! I knew that my baby was inside me for a reason and God had a plan for her and I trusted that He would take care of us. The Dr's were unsure Laura would be able to make it through the delivery, but at 36 weeks gestation I gave birth to a beautiful baby with a head full of red hair! She was the tiniest thing I had ever seen, 3 pounds 7 ounces 16 1/2 inches long! The Dr's were not very hopeful about Laura's future and the neurologist recommended I 'put her in a home'. He said she would never walk or talk or be able to do anything or live a normal life. But, once again, I knew God had a plan and My baby was the way she was for a reason and I was going to take the absolute Best care of her that I could. When she was in an incubator in the neonatal at MMC I wasn't allowed to hold her so I would put my hand through the hole in the side of the incubator and I would put my mouth up to another hole and sing to Laura while I rubbed her arms and legs with one finger, until I was allowed to hold her and then I would hold her and rock her and sing to her. I pumped my breast milk for Laura which helped her gain weight quicker and they would give it to her through her NG tube until she learned how to suck from a special bottle designed for cleft lip and palate babies. I was so excited to finally be able to bring my baby home after 8 weeks in neonatal! The last 22 years have been hard for Laura, She's had Tons of surgeries and hospital stays, but she never complains, always smiles, loves everyone, and is the strongest person I know! We are so excited that Laura has been selected to be Honored at the Father Daughter Dance This Year!
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Chyann & Jade Hoyle - Our 2013 Honorees

Chyann and Jade Hoyle, daughters of Stephen and Rosanna Hoyle, have cystic fibrosis. At first glance, it is difficult to see the effect this disease has played in their lives. Thanks to the great strides the Cystic Fibrosis. Foundation has made, Chyann and Jade lead a very active lifestyle. The medications the girls take and the breathing treatments they do each day help to delay or defer the progress of the disease. The girls need check-ups every three months and sometimes spend ten days at a time in the hospital for treatments and strong antibiotics.

Though the girls function almost normally for girls their age, their daily regimen is far different from most other young girls. Though blessed with good insurance that pays for a huge portion of the cost, the Hoyles experience a big financial burden with the girls’ illnesses.
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Bethany’s Place - 2006 - 2011

All profits collected from 2006 to 2011 helped fund the recent addition of Bethany’s Place at Ogeechee Area Hospice. Bethany’s Place is a large conference-community room with restroom facilities and a serving kitchen. The space can accommodate activities for the more than 75 employees and 85 volunteers. Plans for the room also include educational sessions for the community, bereavement activities and other events associated with Hospice and palliative care.