Local IB Boy, Krystopher, needs your Help! In desperate need of Bone Marrow Transplant!
Jan 15, 2016 06:56PM ● Published by Paul Spear
Krystopher Paldi was born October 31, 2009, and fell extremely ill when he was only 4
weeks old. He remained in the PICU for 10 weeks while the medical staff worked diligently to find an answer to his illness. Krystopher was diagnosed with IPEX Syndrome (immunodysregulation polyendocrinopathy enteropathy X-linked syndrome).
IPEX is a rare disease linked to the mutated FOXP3 gene. This autoimmunity is called IPEX and it is the attack from the body's own immune system against the body's own tissues and organs. When Krystopher was diagnosed with IPEX, he was the 85th case worldwide. Krystopher's younger brother, Khaidyn was diagnosed in the womb with the same mutated gene (86th IPEX case worldwide). After his birth, Khaidyn fought for 36 hours before losing his brave fight against IPEX.
When Krystopher was 5 1/2 months old, he received his first bone marrow transplant. The donor, a 47 year old female from Germany, was a 10/10 perfect match. Krystopher and his family moved to Seattle for a year and a half, living in the Ronald McDonald House, while he received treatment. Krystopher was in complete isolation for 9 months during that time. After the bone marrow transplant was successful and his health improved, Krystopher and his family were able to move back home to San Diego where Rady's Children's Hospital took on the challenges of Krystopher's disease. For the past 5 years, Krystopher has battled for his life. He is currently still receiving IVIG treatments, frequent blood transfusions, and chemo every 4 to 6 months. The chemo is an essential treatment as it fights off the cells that attack his very own body. There is no protocol. Krystopher and his family go to the Cancer and Blood Disorder Center sometimes multiple times a week for labs, medications and frequent blood transfusions.
Krystopher is still fighting a tough battle. We need your help…..
On January 14, 2016, lab test results arrived. The 10/10 perfect donor cells are no longer
working. Krystopher (age 6) will require another vital bone marrow transplant. This means he will have to wait for another donor match, and undergo months of isolation while his body prepares for the transplant. WE ARE STILL LOOKING FOR A MATCH. WE NEED YOUR HELP. No donation is too small, so if you are able, please consider donating to Krystopher's medical fund. If you are
unable to donate, please consider sharing his journey and praying for Krystopher and his family during this difficult time. Thank you for reading Krystopher's story, getting tested, donating and/or praying for the bravest little boy I know. If you would like to get yourself check to see if you are a match and could save Krystopher’s life please visit http://www.deletebloodcancer.org to get registered and they will guide you through a simple swab process. If you would like to be tested specifically for Krystopher you can contact Jeannette Shambaugh at JeannetteShambaugh@gmail.com for details. It is free and conveniently done in the comfort of your home. Thank you in advance for your time and support!!
Krystopher’s Team of Support!!
This is a local IB kiddo I am proud to know! This is Krystopher and he needs our help! He is very ill with a rare condition called IPEX. Read his story to understand what this child has endured in his 6 years. He needs another bone marrow transplant to survive. What I need everyone to do is register with the bone marrow registry, pray for a miracle and donate if you can. His mother is Jaymie Paldi. Please share the heck out of this to every news outlet you can. If anything needs to go viral this story does. Thank you IB!!!!
Krystopher Paldi was born October 31, 2009, and fell extremely ill when he was only 4 weeks old. He remained in the PICU for 10 weeks while the medical staff worked diligently to find an answer to his illness. Krystopher was diagnosed with…