Henry Kosair Kid

Henry

Henry was born with the spinal defects spina bifida and Chiari II malformation, as well as hydrocephalus, a buildup of fluid in the brain. Henry is no stranger to Kosair Charities and our supported agencies. Besides Spina Bifida Association of Kentucky, he also receives therapy at The Kids Center for Pediatric Therapies, and has received financial assistance through the Kosair Kids® Program.

In 2015, Henry received a ZipZac, a small, lightweight, mini wheelchair that is closer to the ground, through the Kosair Kid® Program. Henry’s ZipZac wasn’t covered by insurance, and was too costly for the Hinson’s to afford on their own, but thanks to Kosair Charities donors, Henry received this tool to increase his mobility.

The morning of Dec. 12, 2017, a water main ruptured in the night in Louisville’s Shelby Park neighborhood and the Hinson’s woke up to find their home surrounded by water. The Hinson’s house had minimal damage, but Henry’s ZipZac was in the back of the family van, which was destroyed in the flood. Henry didn’t have time to wait for a new ZipZac, so Erin called Kosair Charities. Thanks to the Kosair Kids® Program, Henry had his new ZipZac on Dec. 19, just one week after the flood.

The Hinsons are thankful to Kosair Charities donors. Erin said, “It’s an amazing thing to have Kosair Charities in our community in general, but because of the generosity of so many, Kosair Charities is able to act quickly and intercede in times of crisis when families are dealing with the unexpected.”

We want to continue helping kids like Henry in times of crisis, but we need your help to do so. Make a gift today!

Read more about Kosair Kid® Henry in the Spring 2018 Edition of Kite Tales.

Ellie Kate Kosair Kid

Ellie Kate

Ellie Kate became a member of the Cook Family in 2013 at the age of 20 months old. Ellie Kate was profoundly deaf when she was matched with her parents, Kenny and Jana Cook. The Cooks spent the months leading up to the adoption learning everything they could about raising a child with hearing loss. They worked with speech therapists, developmental interventionists, and audiologists before they even got to meet their baby girl.

Ellie Kate was severely delayed across the board due to her hearing loss and spending her first 20 months in an orphanage. She only weighed 13 pounds, was not talking, was barely able to sit up, and was taking nothing but bottles. She had her first appointment at Heuser Hearing Institute, a Kosair Charities supported agency, just one month after getting to her forever home.

Ellie Kate started her journey at Heuser in the Early Intervention program, First Steps. Through First Steps Ellie Kate received occupational therapy and quickly realized food was delicious and learned how to chew and swallow solid foods. She also learned how to crawl, cruise, walk, and run all before her 2nd birthday.

On December 23rd, 2013, Ellie Kate received her first cochlear implant, and turned on the receptor January 3rd, 2014 allowing Ellie Kate to hear for the first time. She had never heard sound before and had to be taught how to listen and respond. Once she grasped responding to sounds, they began introducing new sounds and words to attempt get her talking.

One year after Ellie Kate’s first cochlear implant, she had her left ear done as well. At the age of 3 years and 3 months, Ellie Kate was able to experience surround sound hearing for the first time. Since the second implant, Ellie Kate’s language and listening has increased tremendously. Her speech is still very delayed, but she has made mass improvements.

Jana said that having a child who is deaf is the easiest hard thing she has ever done. Now that the Cook’s have a support system in place, thanks in large part to Heuser Hearing Institute, they are ready to welcome another Kosair Kid® into their family and face any challenges together.

Learn more about Ellie Kate in the Fall 2017 Edition of Kite Tales.

Addonis Kosair Kid

Addonis

When Addonis Thomas was just 15 months old, his parents noticed that he was not hitting the developmental milestones for most children his age. After an initial diagnosis of apraxia, a motor speech disorder, and countless speech therapy sessions, the Thomas family knew there was more to it.

In 2015, almost 5 years after his initial diagnosis of apraxia, Addonis was officially diagnosed with autism spectrum disorder, attention deficit hyperactivity disorder, reception and expression disorder, a speech delay, and low muscle tone.

Addonis is now 9 years old and still struggles with speech, which has affected his social development. He receives speech, group and occupational therapy at the Kids Center for Pediatric Therapies, a Kosair Charities supported agency. His mother says it is as if the words are stuck in Addonis’ throat, and he cannot get them out.

Aisha says she preaches progression, not perfection. She knows that some things that are not big milestones for most kids are huge for Addonis. Although Addonis is only 9, his parents and therapist have been helping to teach him life skills like sorting laundry, keeping spaces clean and doing dishes. His parents want to make sure they do everything in their power to allow Addonis to live on his own as an adult.

Addonis continues to make strides, and thanks to the dedication of his family and the Kids Center, we have no doubt that he will be able to conquer anything that comes his way!

Learn more about Addonis in the Summer 2017 Edition of Kite Tales.

Jacob,Jenna and Jordan Kosair Kids

Jacob, Jenna and Jordan

After arriving 5 weeks before their due date Jacob, Jenna and Jordan were whisked away to the Neonatal Intensive Care Unit to be given supplemental oxygen and extra care. Jordan came home at 14 days, and Jacob two days later. Jenna was in the hospital for a full month because she was having trouble breathing on her own. While it was tough having all three at home, the brave parents soon got them on a feeding and eating routine that worked for the whole family.

That’s when the hospital bills started coming in.

Terry and Lisa applied to the Kosair Kids Program for help with the triplets’ hospital bills, and because of the generosity of our donors, we were able to help them.

Now Jacob, Jenna, and Jordan are happy and healthy 7-year-olds. They love each other and love making new friends. They have struggled with speech delays, but Kosair Charities stepped in to cover the cost of speech therapy, occupational therapy, and ear tubes to get them back on track.

Terry expressed his gratitude for our donors support, “If it weren’t for Kosair Charities, I don’t know where we would be today. I remember a time when two out of three kids needed tubes in their ears and we didn’t know if we were going to have to choose who needed it more. That’s when Kosair Charities stepped up again because there was no way we could afford it all.”

Thank you for giving the Downs triplets and so many other Kosair Kids better tomorrows through your support of Kosair Charities!

Harper Kosair Kid

Harper

Harper was born with a ridge on her forehead that her pediatrician discovered at her 1-week checkup. She was diagnosed with Muenke Syndrom and craniosynostosis, which meant that her cranium fused together prematurely. She had surgery to open her soft spot at just 6 months old.

Later, Harper’s daycare noticed that her speech was not developing as it should and recommended evaluation. She was referred to a pediatric hearing center that discovered she had moderate hearing loss in one ear and severe loss in the other. They prescribed specialized hearing aids, but the Mull’s insurance would cover only a small portion of the cost. They applied to the Kosair Kids® Program and Kosair Charities stepped in to cover the gap between the cost and what insurance would cover.

Allison said “The hearing aids have helped a tremendous amount. I’ll never forget the first time she heard music with them – her face just lit up!”

Since we caught it early and got Harper the help she needs, she should be able to catch up on her speech delay and have no long-term developmental problems.

Molly

Molly Turner began having seizures almost immediately after she was born in July 2009. The third child of Chris and Elizabeth Turner, she spent the first month of her life highly sedated and on a feeding tube in the NICU while doctors tried to get her seizures under control. Though Molly went home in September of that year, she was frequently in and out of the hospital.

Genetic testing when she was 5 years old confirmed Molly has a KCNQ2 mutation. This uncommon mutation has been linked to infant seizures and significant developmental delays. Her parents joined an online support group for families dealing with this condition and learned there are only around 250 cases worldwide.

Molly may not be verbal or mobile and is visually impaired, but she is otherwise healthy and full of energy. A nonstop smile machine, Molly is constantly bouncing around in her chair, and she happily engages with the people around her. She loves reading, listening to music and watching television or movies. She can say “Hi” and her family hopes she will one day be able to communicate by pressing phrases or photos on a tablet designed for the disabled.

“Progress is there,” Elizabeth says. “It’s just slow. She really is just so content. Her smile—she lights up a room with it. If only I could just bottle that energy and sell it. . .”

“Along with our family and friends, our Kosair family is truly our lifeline and support,” Elizabeth says. “Molly allows me to see the ability in her disabilities every day, and I thank God for that gift.”

Lily Kosair Kid

Lily

Lily is a happy, energetic and smart 8-year-old. She loves dogs, books, crafts and watching YouTube videos. She doesn’t appear to be fighting a chronic illness, but she is. Every day, cystic fibrosis tries to steal away her health, but Lily fights back, proving her strength while inspiring others.

Lily was diagnosed with cystic fibrosis at birth, and symptoms began to show when she was five months old. She wasn’t gaining weight, so a feeding tube was placed in her stomach for extra nutrition. She underwent various procedures and endured many hospital stays to fight the damage that CF was causing her little body.

In 2012, she began kindergarten. Within a couple of months, her lung collapsed. She was in and out of the hospital for the next four months and had to miss out on her kindergarten year. At 5 ½ years old, Lily was on constant oxygen and 28 pounds.

Lily was approved to receive Kalydeco, a new FDA-approved medicine. She took her first dose on Feb. 1, 2013, and within a few weeks, she showed a huge improvement. Her weight was going up. She no longer needed an oxygen mask. She could run and play without getting winded.

Today, Lily takes Kalydeco twice a day, along with other medications that help her thrive. She does airway clearance vest treatments with various breathing treatments, multiple times a day. These treatments and medications allow her lungs to get rid of the thick, sticky mucus caused by CF and allows her to gain the weight she needs. Cystic fibrosis is a horrible disease that steals the lives of many young children and needs to be fought daily. Lily has shown that she is willing to stay strong and can endure anything that comes her way.

Noah and Gabriel

Noah’s adoption as an infant came with a set of special challenges for him and his mother, Dawn. Diagnosed with cerebral palsy, global developmental delays, microcephaly, severe sensory integration disorder and a myriad of other physical challenges, Dawn was told Noah would never be able to walk or talk. Now, at age eight, Noah is able to both walk and communicate.
Noah knows exactly what he wants to be when he grows up. Such certainty might seem questionable for an eight-year-old, but Dawn isn’t surprised at her son’s conviction to be a priest. Dawn says that even as a baby, Noah was still and calm in church, where in many other places he was not. He even reenacts Catholic mass before bedtime and can recite certain prayers in Latin.

Two years after Noah’s adoption, Dawn was blessed with the adoption of her second son, Gabriel, who like his brother, also suffers from cerebral palsy and sensory integration disorder. Gabriel has also been diagnosed with fetal alcohol syndrome.

At four years old, Gabriel graduated from speech therapy, which Dawn attributes to early intervention and the help of attentive therapists. And despite his medical difficulties, Gabriel is able to run and play with his friends, enjoys being with Noah and their adopted sister, Angelina, and is fascinated with trains.

Dawn recognizes how fortunate she and her sons are to have Kosair Charities on their side. “We’ve have top notch facilities in our community that I’ve used for my children’s care and they have all in some way been supported by Kosair Charities. We are so thankful.”

Noah and Gabriel are also 2015 playhouse recipients from the partnership of the Building Industry Charitable Foundation, Youth Build and Kosair Charities. Their half-church, half-train station themed playhouse is a resource for their ongoing therapy and a place where they can enjoy being kids.

Vance

Just three weeks after his arrival into the world, Vance was diagnosed with Norrie Disease, a rare genetic disorder that causes complete blindness in both eyes. This disease often comes with hearing impairment, developmental delays, mental challenges and behavioral abnormalities.

As a career military family, parents to three other young children and newcomers to the Mt. Washington area, Brandon and Emily were used to dealing with change, but Vance’s disabilities presented a new challenge.

Kosair Charities’ contributions of resources and professionals have helped the Lovett’s care for their son, who now attends Visually Impaired Preschool (a Kosair Charities Supported Agency). Sensory issues, communication and anxiety with new experiences are currently his biggest struggles, but Emily says that Vance has a wonderful sense of humor and loves to laugh and play with his brother and sisters.

Jenna Kosair Kid

Jenna

Jenna was born prematurely and at 18 months old was diagnosed with Periventricular Leukomalacia, a form of white-matter brain injury that affects motor skills. That led to a diagnosis of Spastic Diplegia, a form of Cerebral Palsy known as “Little’s Disease.”

Jenna has had two surgeries. First came a Dorsal Rhizotomy, which accesses the spine and selectively destroys problematic nerve roots to relieve leg spasticity. Then in March of 2014, she had a femoral osteotomy, a difficult procedure that typically involves cutting, shaping or removing bone. She had this procedure on both hips.

Jenna has received direct support from Kosair Charities, including an adaptive eating seat that insurance would not cover. And since age three she has received occupational and physical therapy at The Kids Center for Pediatric Therapy, which receives major support from Kosair Charities. Jenna loves going there. “It doesn’t seem like doing therapy,” her mother Rawan said. “They make it fun for her.”

Jenna’s mother and father are among the many parents in and around Louisville who can hardly believe they found something like Kosair Charities. “If it weren’t for Kosair Charities,” Rawan said, pausing. “Oh goodness—Jenna wouldn’t be where she’s at. They help with things that insurance won’t pay for.”

Learn more about Jenna in the Summer 2015 Edition of Kite Tales.