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Thanks to IB Community giving, 6 year old Krystopher has fighting chance

May 26, 2016 03:06AM ● Published by Paul Spear

Thanks to IB Community's Helping Spirit 6 year old Krystopher now has a fighting chance. Will be off soon for Seattle in a couple of weeks to get much needed Bone Marrow Transplant.

Knowing that 6 year old Krystopher was In dire need of a Bone Marrow transplant to make it to
  the age of 7, IB residents Edel Vernazza and Shawna Chalmers of the San Diego Small Business Forum organized a Bone Marrow Drive with the help of the IB Boys and Girls Club. The first Bone Marrow Drive for Krystopher was in January of this year at the IB Sports Park and was a big success with the Mayor turning out along with a couple hundred Imperial Beach residents. Of those turning out about 149 actually made it to the point were they were able to get tested to see if there was any chance that they could be a Bone marrow Donor for Krystopher.

 In February, not leaving anything to chance, the SD Small Business Forum put together a second Bone Marrow Drive for Krystopher around Valentine's Day with a shopping event put on down by the beach called "Shopping in the Heart of IB" with all profits made that day going towards helping the expenses of Krystopher's family as well as the 2nd Bone Marrow Drive going on down in the Imperial Beach Pier Plaza.

Well good news, with the 2 Bone Marrow Drives put on by the SD Small Business Forum and great community spirit in coming out and supporting the events, they were able to find 4 people who were able to give Krystopher the Bone Marrow Transplants he so desperately needs to make it to being 7 years old.          

So thanks to the big, giving, hearts of the community of Imperial Beach, the fantastic job by 
 Edel and Shawna of the San Diego Small Business Forum, the IB Boys and Girls Club and lot of volunteers who worked the event and gave of their time, in two weeks Krystopher will be heading off to Seattle as that is the only places that does the very specialized treatment he needs for the bone marrow transplants.

The family could still use some help as the ronald mcdonald house that they were hoping to stay at is still full that first month but come rain or snow they are still determined to go to Seattle and get Krystopher his life saving treatments.

I know the family would like to thank everyone for all they have done and we'll be getting updates on how things are going. the main thing is that krystopher is going to Seattle next month thanks to all of your big hearts.
If you would like to read more about Kystopher's rare condition or find out how you can give to help with his trip, you can keep reading below!
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Thank you! Paul Spear, Editor, DigImperialBeaach.com

 

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!!

#nevertapout


https://www.youcaring.com/krystopher-paldi-503321#.Vpg5W7thjP0.facebook

 

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's IPEX Journey

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…

YOUCARING.COM

 Krystopher39s IPEX Journey Krystopher Paldi

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