Jeffrey's UDN Fund
Donation protected
Hi, I'm Denise Kanfield and my 14-year old nephew Jeffrey has been accepted to the Undiagnosed Disease Network (UDN) to help diagnose and find a way to save his life. His mom, my sister Debbie, will be taking Jeffrey to Houston regularly to work with the staff and neurologists to try to get a diagnosis and effective care starting next week. The funds raised will pay for their travel to Houston, the medical costs they will and have been incurring and help day to day if Debbie is not able to return to work in the fall (she is only allowed 10 absences and her FMLA has run out).
My sister (Debbie Johnston Kreiger), her husband Jeff and mother-in-law Maureen have been working tirelessly to get Jeffrey the help he needs especially in the last 12 months as his health significantly declined. They've tried to manage financially through Jeffrey's 4 surgeries, 2 procedures (to drain fluid off his brain), and 32 nights in the hospital in the last year. Last month they inserted a feeding tube to nourish him and maintain his weight at 71 lbs. If you don't know Texas passed a law that cut care to medically fragile children. Under this program Jeffrey now has limited access to the specialists who have been helping to diagnose and treat him. He was not eligible for the wheelchair he needs, the feeding bags ($45/bag x 4 bags a day), the saline to flush his intestines, nor the care of home visit nurses to assist his mom and dad in performing these services. Debbie finally got approval this week to get the feeding pump, formula and supplies covered a month after the surgery. The law says that if Parents don't like the care the state provides they can pay for the care they want. Debbie is a school lunch room supervisor and Jeff is a warehouse manager, they can't afford the care Jeffrey needs. She is constantly fighting insurance and the state for the basics. The money raised through this will help either get the care Jeffrey needs to get better or provide peace of mind while they at least try.
Thank you for reading about Jeffrey. I cannot express enough gratitude for the help, support and prayers you may offer.
About Jeffrey:
Jeffrey was born in May of 2002 to Debbie and Jeff Krieger. He was born with both physical and mental disabilities and autism. Over the years Debbie and Jeff learned that he would be limited to a mental age of about 6, they struggled through ear and eye surgeries, significant autism behavior issues and general intestinal health issues. They had the amazing support of our Dad until he passed in April of 2014 and Debbie’s best friend Tonya who worked closely with Jeffrey and watched him regularly until she passed unexpectedly in 2015.
Last year Jeffrey started to get more frequent intestinal issues and was hospitalized. Ultimately they inserted a tube to help with moving things through his intestines resulting in Debbie and Jeff regularly flushing his system with a saline mixture so things did not back up. Throughout the process Jeffrey started eating less since it hurt to eat and process food.
By early this year, he had lost significant weight and was having additional health issues impacting his mobility. He was hospitalized several times with seizures and mental confusion. In May they determined he had a spinal fluid leak on the brain. They did a procedure to drain the fluid and to identify what the issue was. It briefly helped and they did an additional surgery in June. During these surgeries they have to keep Jeffrey immobilized and are very careful about how they bring him off his anesthesia. One time he awoke pulled out all the tube, another he tried to get up and fell resulting in a concussion. Finally in July they told Debbie if they didn't insert a feeding tube he wouldn't be with us in 3-6 months.
Jeffrey really struggles to understand all of this, he has autism with sensitivity issues, mentally he is 6 and he is very disheartened. Recently he has been telling his mom that he wants to go to heaven because Jesus and the angels want him to come. Debbie is working very hard to create a quality of life through all these struggles and hospitalizations. In the middle of it all, this summer she got notice from her landlord and had to find a home, pack and move while trying to take care of Jeffrey in the hospital. I love how my sister has focused on finding activities that Jeffrey enjoys and spending time with him. I hope this helps to take some of the stress off her.
Learn more about Protect TX Fragile Kids - http://www.protecttxfragilekids.org/the-problem-with-star-kids.html
My sister (Debbie Johnston Kreiger), her husband Jeff and mother-in-law Maureen have been working tirelessly to get Jeffrey the help he needs especially in the last 12 months as his health significantly declined. They've tried to manage financially through Jeffrey's 4 surgeries, 2 procedures (to drain fluid off his brain), and 32 nights in the hospital in the last year. Last month they inserted a feeding tube to nourish him and maintain his weight at 71 lbs. If you don't know Texas passed a law that cut care to medically fragile children. Under this program Jeffrey now has limited access to the specialists who have been helping to diagnose and treat him. He was not eligible for the wheelchair he needs, the feeding bags ($45/bag x 4 bags a day), the saline to flush his intestines, nor the care of home visit nurses to assist his mom and dad in performing these services. Debbie finally got approval this week to get the feeding pump, formula and supplies covered a month after the surgery. The law says that if Parents don't like the care the state provides they can pay for the care they want. Debbie is a school lunch room supervisor and Jeff is a warehouse manager, they can't afford the care Jeffrey needs. She is constantly fighting insurance and the state for the basics. The money raised through this will help either get the care Jeffrey needs to get better or provide peace of mind while they at least try.
Thank you for reading about Jeffrey. I cannot express enough gratitude for the help, support and prayers you may offer.
About Jeffrey:
Jeffrey was born in May of 2002 to Debbie and Jeff Krieger. He was born with both physical and mental disabilities and autism. Over the years Debbie and Jeff learned that he would be limited to a mental age of about 6, they struggled through ear and eye surgeries, significant autism behavior issues and general intestinal health issues. They had the amazing support of our Dad until he passed in April of 2014 and Debbie’s best friend Tonya who worked closely with Jeffrey and watched him regularly until she passed unexpectedly in 2015.
Last year Jeffrey started to get more frequent intestinal issues and was hospitalized. Ultimately they inserted a tube to help with moving things through his intestines resulting in Debbie and Jeff regularly flushing his system with a saline mixture so things did not back up. Throughout the process Jeffrey started eating less since it hurt to eat and process food.
By early this year, he had lost significant weight and was having additional health issues impacting his mobility. He was hospitalized several times with seizures and mental confusion. In May they determined he had a spinal fluid leak on the brain. They did a procedure to drain the fluid and to identify what the issue was. It briefly helped and they did an additional surgery in June. During these surgeries they have to keep Jeffrey immobilized and are very careful about how they bring him off his anesthesia. One time he awoke pulled out all the tube, another he tried to get up and fell resulting in a concussion. Finally in July they told Debbie if they didn't insert a feeding tube he wouldn't be with us in 3-6 months.
Jeffrey really struggles to understand all of this, he has autism with sensitivity issues, mentally he is 6 and he is very disheartened. Recently he has been telling his mom that he wants to go to heaven because Jesus and the angels want him to come. Debbie is working very hard to create a quality of life through all these struggles and hospitalizations. In the middle of it all, this summer she got notice from her landlord and had to find a home, pack and move while trying to take care of Jeffrey in the hospital. I love how my sister has focused on finding activities that Jeffrey enjoys and spending time with him. I hope this helps to take some of the stress off her.
Learn more about Protect TX Fragile Kids - http://www.protecttxfragilekids.org/the-problem-with-star-kids.html
Organizer and beneficiary
Denise Kanfield
Organizer
San Antonio, TX
Debbie Krieger
Beneficiary