Kirk girls, local’s nieces, need help | AspenTimes.com

Kirk girls, local’s nieces, need help

Dear Editor:I’m writing to tell the community about my two young nieces who are struggling with a rare and fatal metabolic disorder. Caroline, 6, and Kate Kirk, 3, are daughters of Doug and Alison Kirk of Nashville, and the granddaughters of the late Dr. Rodney E. Kirk. They have been diagnosed with Niemann-Pick disease type A/B, a disorder that strikes one in a million people. Aspen Times Managing Editor Allyn Harvey has informed me that the paper is reluctant to write this story because the two girls are not local. I am writing to you in hopes that you will reconsider your decision and write an article telling the plight of the Kirk girls. Kate was approved for and recently received, a potentially life-saving umbilical cord transplant at Duke University’s Pediatric Bone Marrow Transplant Unit in North Carolina. It is believed that this is the first time this type of transplant has been performed on a Niemann-Pick patient.Kate underwent two weeks of chemotherapy to prepare her body for acceptance of the donor cells. She has received her transplant and her body has begun to grow the donor cells that will hopefully break down the enzyme which her body was lacking. Currently she is an outpatient but must visit the hospital daily for treatments and monitoring. It may be a year before the family knows if the treatment was successful.If all goes well, the transplant may slow the progression of the disease, but will not repair the damage. Kate’s sister Caroline was denied the transplant because she is too far progressed and would not survive the transplant.She remains at home in Nashville with Doug and currently requires 24-hour care. Doug continues to work while Alison has had to close her psychology practice to care for Kate full-time in North Carolina. Thankfully, insurance has agreed to cover the bulk of the transplant; however another $150,000 is need to cover follow-up medical care and living expenses for the Kirks as they commute between Tennessee and North Carolina.Fund-raising efforts are under way, under the direction of the Children’s Organ Transplant Association, and a wonderful website has been established by a dedicated group of friends and volunteers.If you won’t write a story, please publish my letter so the Kirks can feel the support of the community they grew up in and the once-sleepy ski town that Dr. Kirk saw hope in when he first moved to the valley with his four small children in 1968. Please visit online at http://www.forkatessake.org for periodic updates on Kate’s progress as well as ways you can help the family. Jennifer Kirk-BauerBlue Lake

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