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Welcome to Hailey's webpage. Hailey was diagnosed with Hemophagocytic Lymphohistiocytosis(FHL/HLH) in July 2003 when she was just 11 months old. She has had involvment of the Liver, Spleen, Lungs, and Brain. On December 12, 2003, she had her life-saving Stem Cell Transplant. She is now a beautiful 6 year old.
Hailey's Story
Hailey was born 8/5/02 completely happy and healthy, no problems. She was developmentally perfect in every way; sitting up at 5 months, crawling at 8 months, and beginning to walk at 10 months. She started getting fevers and ear infections at about 10 months. The pediatrician didn't think anything of it although we were there often. Hailey was finally diagnosed with HLH when she was 11 months old by a different pediatrician and was sent immediatly to The University of Chicago Children's Hospital. There, they drew blood from me and Hailey's dad to see if the HLH was viral or familial(genetic). They started Chemo within 1 day at the hospital while we waited for the results. They came back days later telling us that it was familial. We then wanted to get Hailey in a remission so we could move forward in going to Children's Memorial Hospital for the transplant. They don't do transplants at U of C. Within a week of being inpatient at the hospital she had her first bad seizure which caused her to stop breathing and loose a lot of what she had already learned including sitting up, standing, and holding her head up. We started physical therapy and occupational therapy in order to get her to relearn all of those things. We came home for only a week in September and that is when she took a turn for the worst. Hailey had to be rushed back to the hospital because she started to get a high fever and her breathing changed. At the hospital she had to be intubated because she had stopped breathing and she was put in a medicated coma in order to find out what was causing all of that to happen. The docs there did many tests and figured out that the HLH had moved to her brain and caused her to stop breathing. She was intubated for 2 months while she had to have drains put into her head for the extra fluid to come out. In November she was transferred to Children's Memorial PICU for transplant because U of C didn't think they could do much more for Hailey. There she had a Tracheotomy placed and they put her on a ventalator while they decided their plan of action to get Hailey ready for transplant. It was a difficult task because of all of Hailey's problems, they didn't want to use a chemo that would hurt her liver to much or cause seizures. They did a great job. They got her as healthy as possible before moving to transplant. She had her transplant on December 12, 2003. About a month later we found out she was 100% engrafted. She started getting better soon after. We left the hospital from the PICU in April '04.
Hailey is now a beautiful 5 year old and 4 years post transplant, doing well. She still has a Trach and is ventalated at night due to sleep apnea. She has a G-Tube for all of her feedings because she doesn't eat. She does not sit up, walk, or talk like a normal 3 year old because of all of the damage the disease caused to her brain. She has made a lot of progress with Physical and Occupation therapy. She now smiles, holds her head up, and sits up all by herself for a short period of time.
For more information on HLH/FHL visit the Histiocytosis Website.
***Please check the Histiocytosis Event's page! There are many event's coming up! If any are in your area please go & help find a cure!***
**Click here to get your HISTIOCYTOSIS bracelet**
Don't forget to sign the guestbook
& let us know you stopped by!
Click here to see Hailey's 'Quilt of Love'
Some of our good friends with HLH/FHL or LCH...
Melanie, Kristan Grace, Bryce, Autumn
Christopher, Jeremy, Gianna & Olivia, Isaac
Heavens Angels
Sean, Matthew, Zachary
Caleb, Nicholas, Tucker
Journal
Saturday, May 21, 2011 7:31 PM CDT Hailey passed away on a cold but sunny last day of January.... I miss her sweet face every single day. I'm glad that I had her in my life for 8 yrs...never a day will pass that I wont think of her....she made me a better person...a better mother than I thought I could be..So my sweet Hailey, watch over your mommy and sisters....we love you. Always in my Heart baby girl.....thank u to everyone that prayed for her...in my eyes all the prayers were answered...she got to live...a short time but she beat HLH...it didnt take her down....her tired body did.
with love....
Kim, Sean, Paige and Leah <3
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