Thank you following Joeys Journey! This page was first set up when Joey was 8. She is now 13 years old (as of October 2021) and she’s doing well except for last week’s hospital stay and surgeries! Please read the rest of this introduction, but also scroll down for the most recent updates! Original Intro: “Joey Knott is a beautiful, vibrant, and smart 8 year old girl. She was born with a disease called Berdon's Syndrome (MMIHS) which is an extremely rare genetic disorder that prevents multiple systems in her body from functioning correctly. Joey was born on December 31, 2007 in McAllen Texas. Her diagnosis did not come until she was 10 days old and was not confirmed until she was nearly a month old. At the time, it was believed that children born with MMIHS would have a 97% mortality rate by the end of the first year of life. At age 6 months, Joey transitioned home but continued to be in and out of the hospital with a multitude of illnesses and infections over the next 3 years. In her third year of life, she became very ill when a section of her intestine separated from what was left of her digestive system. It attached itself to her abdominal wall, filling with infection which caused a life threatening situation. After four long months in the hospital and many ups and downs, she was released to go home. She was severely disabled and very fragile. Her life expectancy was not long. She was even granted a Make-A-Wish trip where she met her favorite fairies in Pixie Hollow at Disney World. With the help of our hospital support team and some great home nursing help, we devised an unconventional and ultimately successful home care plan that helped her regain strength and achieve a sense of normalcy. For the next 3 years, Joey would not be hospitalized even once. She remained stable, relatively healthy, and continued to grow despite many challenges in managing her overall care. She enrolled in school, joined the craft groups at her library, went to the zoo, learned to draw and ride a bike, and was even a leader on Shearn's Name That Book team. Until her transplant operation, Joey had never eaten a bite of food or had anything to drink. All her medicine and nutrition was delivered through an IV line in her chest. Imagine being 6+ years old, never tasting anything, and always being hungry but not knowing what for. On December 17, 2014, thanks to the generous and remarkable gift of life from a family who had just lost their 8 year old daughter, Joey was given a new lease on life. The doctors removed 9 organs and transplanted a whole new digestive system into Joey's body in one surgery lasting 13 hours. During the transplant surgery, one of the surgeons revealed that, due to an undetected infection, had Joey not gone to transplant, she most likely would not have lived to see her 7th birthday, which was only two weeks away. Within one week of the transplant, she was able to taste her first bite of food, and within two weeks she was up walking around again. Following an extensive recovery period, Joey came home to Houston in April 2015. In June she was hospitalized in Texas and then transferred by emergency care flight to Pittsburgh to be treated for organ rejection issues. After returning to Houston in July, Joey was receiving treatment to prevent pneumonia when she actually contracted it from the medication. She spent nearly 8 weeks at Texas Children's Hospital fighting for her life. During that time, it was discovered that earlier in the year, Joey had not in fact been fighting rejection but had contracted a virulent strain of Hepatitis A that was untreatable. She was released from the hospital in September with the hope that her body could fight the infection on its own. Since October of 2015, Joey's body has continued to battle against Hepatitis A as well as a chronic infection in her urinary system. She has been able to receive treatments at home and has not required hospitalization again. Her lab values, liver numbers, and overall health have continued to improve and stabilize over the last 10 months, and her prognosis is good. The Pittsburgh transplant team feels that she is now ready for her first stoma closure, an intestinal closure operation that will carry Joey one step closer to looking and feeling like all the rest of us. Joey is so happy that she will have one less "thing" hanging off of her! All money donated through the GoFundMe account linked to this Joey's Journey page is used for the family and Joey’s future. Expenditures include temporary housing in Pittsburgh, travel expenses, and costs associated with their home here in Houston. This mother and daughter have been through so much, and we just want them to be able to focus on Joey’s recovery. Please help us to help them by donating in any amount you are able. We appreciate all your prayers, love and support. Go to Joey's GoFundMe page linked below to make a donation, large or small! Thank you so much!
