Hailey's Story

Hailey Joy Kent. was born on June 6th, 2006 prematurely along with her twin brother Ryan. They were born at 33 weeks and 5 days. They both required oxygen and needed to learn how to eat. They spent 15 days in the NICU. They both came home and seemed to be progressing nicely but shortly after Hailey began having problems with her health.

She began vomiting and getting Petichae(pinpoint bruising) and running low grade fevers, after several trips to the pediatrician & being misdiagnosed with a typical virus. Hailey was sent to the emergency room at Tarzana Hospital and was then rushed to Childrens Hospital Los Angeles on October 4th 2006. She was in critical condition & was not expected to make it through the night. She was diagnosed with a rare aggressive form of Leukemia ( Infant ALL with the MLL gene) she started an aggressive high dose chemo regimen the next day and achieved remission on Day 28.

She has spent a total of ten months of her life as an in patient & countless days in the day hospital. She was an extremely sick baby and had several infections and fevers along the way, seizures and many many surgeries and spinal taps. After four months and still on chemo she relapsed in February 2007.

She was started on another even higher dose of chemo to get her into a temporary remission so a bone marrow transplant could be performed. During this time she had several setbacks with infections but was eventually back into remission. Unfortunately her brother Ryan was not a close enough match so the search began for a marrow donor. There were no perfect matches on the National Marrow Donor Registry so we held several marrow drives but Hailey was too sick to wait.

She received a mismatched Umbilical cord blood transplant on May 30th 2007 at Childrens Hospital Los Angeles. After an intense conditioning regimen she received her transplant and spent another four months in the bone marrow unit. She was extremely sick but got to come home on September 4th 2007 and she is still at home under strict house isolation along with her twin brother Ryan who is also isolated so that he wont bring any illnesses home to Hailey.

She has developed Acute and Chronic Graft versus host disease (where the donor cells attack her cells) do to the mismatched transplant. She must stay at home indoors and avoid the sun. She also suffered from VOD (venous occlusive disorder) but she is free from it now.


She takes several medications daily and is on high dose steroids & anti-rejection drugs. She is also receiving in home therapy, physical, Occupational, Feeding and speech four to five times a week and has to go back to Childrens hospital weekly. Her risk of relapse is very high but we continue to pray this will never happen, this would require another transplant which is usually not very successful.

During the last few years Hailey has been struggling to keep her hair which it is believed that it may be due to the graft versus host disease as well she has been having Thyroid problems due to the chemo she received. Overall she is quite happy most of the time in spite of everything she has been through and one big milestone that she passed was taking her first steps and learning how to walk and now she can run along side her brother. Also in 2008 the family celebrated not only Ryan and Haileys second birthday but it had been one year since Hailey had her bone marrow transplant.

Something amazing happened for Hailey and her family in April 2009 when the family learned that Hailey had been granted her wish by the Make a Wish Foundation and from May 8th - May 14th, 2009 Hailey and her family enjoyed a special week of fun filled events at Walt Disney World Park in Florida. She had the time of her life and her family saw her smile so much more then she has ever in her life and seeing Hailey get to just enjoy everyday life that moment will forever stay with the family.

Hailey sure has gone through a lot of bumps, bruises and most recently even some breaks when she jumped off the couch while playing with her brother and broke her leg, proving just how fragile she really is, and still that doesn’t stop Hailey from living everyday with a smile on her face. She is the strongest and bravest little girl in the world and she isn’t going to let anything stand in her way. Look out world because this little three year old is going to make the world a better place.