Joey's Journey
Donation protected
Update for October 2021: It’s been a long time since I have posted an update because 13 year old Joey has been doing so well! This school year, and for the first time ever, Joey is attending classes fulltime on campus at Trafton Academy! This is a huge step, and Joey is really enjoying making new friends and experiencing multiple teachers in a variety of classes. Joey and all eligible students are fully vaccinated against COVID, and the school enforces a strict mask policy.
But Joey had a setback this past week and ended up at Texas Children’s Hospital with fever and two different infections (not COVID). She endured two separate surgeries: the first procedure removed her infected central line, and the second procedure put in a new one. Both surgeries went really well. Joey and her amazing mom Cat Kennedy were finally able to go home yesterday afternoon after a week-long hospital stay, but only after special permission for in-home IV administration of two new and very powerful medications.
While Joey was at the hospital, Cat was unable to work at her part time job. In addition, a lot of extra and unexpected expenses were incurred including parking costs and meals for Cat. Any donations to their GoFundMe account to defray these expenses would be greatly appreciated. Here is the link: https://www.gofundme.com/f/jjyz10
But of course everyone’s prayers for continued healing, good health going forward, and a successful school year are the most important gift each of you can give! Many thanks from Lisa Sandoz Robinson
Update for December 2017: Joey just celebrated her TENTH BIRTHDAY on New Years Eve! 2017 was a difficult year for Joey and her mom Cat, between Joey's extended hospital stay in the spring, and their forced move due to Hurricane Harvey in the fall. Let's make 2018 their best year ever by helping them with their continued extra expenses. Donations to this fund are so appreciated by Joey and her mom! Thank you in advance for your generosity and especially your prayers for Joey's continued stable condition and for further stabilization of their financial situation after Houston's devastating hurricane.
Here is this miracle child's story: Joey Knott is a beautiful, vibrant, and smart 8 year old girl. She was born with a relatively unknown 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 this GoFundMe account 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.
But Joey had a setback this past week and ended up at Texas Children’s Hospital with fever and two different infections (not COVID). She endured two separate surgeries: the first procedure removed her infected central line, and the second procedure put in a new one. Both surgeries went really well. Joey and her amazing mom Cat Kennedy were finally able to go home yesterday afternoon after a week-long hospital stay, but only after special permission for in-home IV administration of two new and very powerful medications.
While Joey was at the hospital, Cat was unable to work at her part time job. In addition, a lot of extra and unexpected expenses were incurred including parking costs and meals for Cat. Any donations to their GoFundMe account to defray these expenses would be greatly appreciated. Here is the link: https://www.gofundme.com/f/jjyz10
But of course everyone’s prayers for continued healing, good health going forward, and a successful school year are the most important gift each of you can give! Many thanks from Lisa Sandoz Robinson
Update for December 2017: Joey just celebrated her TENTH BIRTHDAY on New Years Eve! 2017 was a difficult year for Joey and her mom Cat, between Joey's extended hospital stay in the spring, and their forced move due to Hurricane Harvey in the fall. Let's make 2018 their best year ever by helping them with their continued extra expenses. Donations to this fund are so appreciated by Joey and her mom! Thank you in advance for your generosity and especially your prayers for Joey's continued stable condition and for further stabilization of their financial situation after Houston's devastating hurricane.
Here is this miracle child's story: Joey Knott is a beautiful, vibrant, and smart 8 year old girl. She was born with a relatively unknown 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 this GoFundMe account 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.
Organizer
Lisa Sandoz Robinson
Organizer
Houston, TX
