Our very own KaleighAnn and Kaden Williams have been nominated for an award. To vote for them click on this link. Their story is posted below
Kaleighann Christine Williams is a beautiful 11 year old girl. She was
born March 29, 2005 arriving 10 weeks early. Our little premie weighed 2lbs 2 oz. She spent the next 2 months in the NICU with several complications. She was born with a hole in her heart, feeding issue's and breathing issues but eventually grew strong enough to take her home. She came home on a heart monitor and continued to grow strong. At the age of 6 months, Kaleighann began having seizure's and was diagnosed with Epilepsy and Cerebral Palsey. At the age of 9 months, Kaleigann had her first surgery. She had a tumor removed from her skull.
At the age of 3 we started noticing Kaleighann was going into puberty and wasdiagnosed with Congenital Adrenal Hyperplasia. This is a geneticcondition that limits her body to make vital hormones rendering her dependent on steroids for the rest of her life. Kaleighann had to learn to cope with getting injections everyday to give her body the hormones she needed to prevent her from going into Adrenal crisis. Kaleighann continued to have feeding issues since birth but at the age of 4 she was no longer keeping any nutrition down. She received her first Nasogastric Tube, which pumped her nutrition in to her stomach. She continued to vomit everything and drastically lost weight. This led to them putting in a Nasojejunal tube which then bypassed her stomach allowing nutrition to enter her small intestines.
Kaleighann & Kaden Williams
For the next 2 years she struggled with getting the proper nutrition and eventually was diagnosed with Celiac Disease, Pseudo Obstruction and Gastroparesis.
At this point, they removed her feeding tube in her nose and surgically put a GJTube in her stomach. As the days, months passed, Kaleighann's pain and vomiting increased and she was rapidly loosing weight. At the age of 8 Kaleighann's stomach did a Volvulus, meaning a loop of her intestines twisted around itself, resulting in a bowel obstruction. Clearly her disease was progressing. She was taken to
surgery to fix and bowels and tack down her stomach with a new GJTube. For the next year, Kaleighann's intestines completely shut down and she once again ended up the the hospital and was diagnosed with Pneumatosis Intestinalis. She was put on complete gut rest for a week while in thehospital but eventually her intestines perforated and at the age of 9 she lost all of her colon/large intestines and some of the small intestines and received her ileostomy. She is now considered short gut.
Then at the age of 10, Kaleighann began having respiratory and urinating difficulties. She no longer could empty her bladder and was
diagnosed with Neurogenic Bladder. She is Catheterized every 2 hours and a foley overnight so mom can get some sleep. She became dependent on 3 liters of oxygen to help keep her saturations up to 92% or above.
As you can imagine, Kaleighann has spent a great deal of time in her short life In the hospital fighting to survive. A little over a year ago, with so many of Kaleighann's organs/systems having complications, Kaleighann was diagnosed with Mitocondrial Disease. Her body struggles on a daily basis to make enough energy to keep her organs alive andhealthy. Mitocondrial is what makes energy in our bodies to keep our organs healthy and Kaleighann's is diseased. There is no known cure for this and Kaleighann has been placed on Palliative Care. Our main focus is to keep her comfortable, pain management and happy! She is a beautiful child that enjoys snuggling, camping with her family and
creating beautiful arts and crafts. Her biggest love, besides her mom, dad and brother Kaden is her beloved French Bulldog "Khloe". She
received Khloe as her Make A Wish and they are forever bonded. With everything that Kaleighann has been through and continues to go through, she does it with a positive heart and attitude, a smile on her face and never complains of what procedure she needs to go through or the countless medications I have to give her several times a day. She is fighting this fight with such pose and we are so proud of her. She is a
very brave soul!
Kaden Christopher Williams is a sweet 9 year old boy. He was born March 7, 2007 arriving 6 weeks early. Kaden weighed a healthy 6lbs 6oz and we were so thrilled with that. When Kaden came home from the hospital we knew almost immediately that something was not right. He cried constantly, wouldn't sleep for more than 10 minutes at a time and projectile vomited up everything we tried to feed him. We expressed our concern with his pediatrician and he believed Kaden was colic. Kaden's weight dropped drastically and he was referred to a Gastroenterologist.
He was diagnosed with a dairy allergy and spent the next several weeks trying every daily free formula out there with no success. We decided
to take Kaden to the children's hospital in Madison as he started having seizure's and the vomiting and pain became unbearable. After doing
some tests on Kaden, we received some devastating news. Kaden was diagnosed with Intestinal Malrotation. Intestinal Malrotation is a
congenital anomaly of rotation of the gut causing a sever obstruction.
Kaden's GI track was backwards and kinked not allowing anything to move through. We were told he needed surgery to repair and put the intestines where they needed to be. He was scheduled to receive the LADD's surgery but was quickly told that needed to be put on hold as
Kaden was having some neurological and seizure problems. They ordered a MRI of the brain and we were once again told some very devastating news that would forever change our lives. Kaden was diagnosed with a Chiari Malformation.
Chiari Malformation is a condition in which Kaden's brain tissue was was extended down into his spinal canal. Two tumors were forcing his brain downward and not allowing spinal fluid circulate all around his brain, causing him a great deal of pain. It became evident that he needed brain surgery before gut surgery. At the age of 12 weeks, Kaden underwent his first of 9 brain surgeries. We spent the first year of Kaden's life in the hospital fighting one complication after another. Kaden got an infection in the brain/incision and required another brain surgery a week later. Kaden received his first PICC line which would allow him to receive nutrition (TPN) while we waited for his gut surgery. A few weeks after his brain surgery he went back to the operating room to finally fix his gut! They put his intestines where they needed to be and removed what was no longer working which left him with the diagnosis of Short Gut.
We spent months trying to get Kaden off of TPN and strictly on tube feeding with once again no success. His GI system completely shut down and was no paralyzed. There was no hope now that Kaden would come off of TPN any time soon, if ever. At 8 months old he received his first permanent Central Venus Catheter IV for his nutrition and fluid intake. He continued to fight infection after infection. Kaden is a fighter! At
10 months old Kaden underwent his 3rd brain surgery to decompress his brain due to the Chiari. Shortly after Kaden's first birthday, we took
him home and we learned to completely care for him. Approximately 6 months later, Kaden was diagnosed with Pseudo Obstruction and
Gastroparesis. We were told he would probably not live past 3 years old with all of the complications and infections he continued to have.
With each blood stream infection, he got worse and we almost lost him but he fought so hard. At the age of 2, Kaden once again had to endure yet another (4th) brutal brain surgery. Kaden would continue to have a brain surgery to decompress his brain every year.
At the age of 3, Kaden no longer had the ability to urinate and was diagnosed with a Neurogenic Bladder requiring us to Catheterize him ever 2 hours and a foley at night. Kaden had been dealing with some very high blood pressures which led us to the diagnosis of Right Renal Stenosis. At theage of 4 Kaden went back into surgery to receive his ileostomy due to having one obstruction after another. At the age of 7 Kaden was very sick! He slipped into a coma and was diagnosed with Encephalopathy.
Encephalopathy is toxicity of the brain. He spent a month in a coma state of mind and we were not sure he would come back to us and if he
did would he be with us cognitively. Kaden once again proved to be a fighter and a brave fighter and came home with us. This same year he
had his 8th brain surgery. At the age of 8 Kaden needed yet another brain surgery to decompress the brain but this time his neurosurgeon
came to us with some more devastating news. He did not think Kaden would survive the surgery. He feared he would have a stroke on the
table and die but there was another big problem. Kaden was diagnosed with Hydrocephalus. Hydrocephalus is fluid on the brain. The surgeon needed to do surgery now in order to drain the fluid from the brain. Kaden underwent a Third Ventriculostomy. Along with his sister, a
little more than a year ago, Kaden was diagnosed with MitocondrialDisease. It is a terminal disease with no known cure but Kaden fights harder everyday to live out his life to the fullest. He has been put on palliative care and they help me to manage his pain and symptoms. He
struggles with many things everyday but is so very brave and courageous. He amazes me with his love for God and his family. He enjoys playing with super hero's, camping and snuggling with his mom.
Come out and show your support for Kaleighann and Kaden by visiting with them and the other nominees for this years Healing Dreams Foundation HONORS Awards at the Celebrity Bartender Event Thursday April 13th: https://www.facebook.com/events/1868715173346910/. While you are there you can be the first to purchase your tickets to this years Night Of Dreams & Celebrity Lip Sync Battle Event to see if Kaleighann & Kaden wins the 2017 Steven R> Stiles Courage Award Thursday August 10th: