Lilly’s Fight
By: Al Ratcliffe
CBS 42 News
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A Blount County infant, with a very rare disease, will soon receive have an operation that could save her young life. But first, the family must get to the doctor nearly a thousand miles away!
Ten fingers, ten toes, two eyes and a nose. Three and a half month old Lilly Kulungian has them all, as well as a twin sister. She also has something else. Osteopetrosis. "Most children with this disease don't live till the age of six. Some may make it till the age of 10," says mom Christal Kulungian.
Osteopetrosis or Marble Bone Disease is a condition that won't allow her bones to form or work properly. It can eventually lead to blindness, deafness and even death. Her dad Tim, says the family is holding up as well as can be expected, "If we could have people keep us in their thoughts and prayers. Keep Lilly in their thoughts and prayers as we go through this challenging time in our life would be greatly appreciated."
But there has been some good news. Medicaid has given the green light for the Kulungian's to take Lilly to Minnesota for a potentially life saving bone marrow transplant from an older sibling. "There is a doctor in Minnesota and he is actually the on that creates the protocols and has had the most success," says Christal.
Patricia Harris is Lilly's pediatrician. This is the first case of Osteopetrosis she's ever seen. And she says the symptoms can mimic other much less serious problems. "A lot of times when newborns present initially, if they're born early, they can have anemia, which is the low red blood cell count, of prematurity. And so it's not always considered abnormal."
The Kulungians say there is between a 20 to 50 percent success rate for the bone marrow transplant. But it's still a chance at life for their little girl.
Even though the transplant will be covered by Medicaid, there are still thousands of dollars in expenses the family will have. A trust fund has been set-up for those expenses in Lilly's name at Traditions Bank in Cullman. And, will soon be another set-up at Regions Bank here in Birmingham. Any unused money will be donated to Osteopetrosis research.
Updates
6/23/08
Lilly developed an infection in her GTube and Central venus line this past week and was hospitalized. Her blood counts dropped into dangerously low levels while in the hospital. She recieved a blood transfusion to stabalize her. She is back home and recieving her antibiotics through the CVL. The infection will delay any travel in the next week. Much time is spent caring for Lilly. Her medical needs during a 24 hour period surpass what one can only imagine. We do all that we can at home in order to have her in the comfort of her own environment as much as possible. We also do it for our other four children. They are in need of much attention during this time also. The three older children - Seathe, Hannah and Delilah have been so understanding and loving through all of this. We are so blessed to have such wonderful children. Rose (Lilly's twin sister) - well, she has been passed around from place to place for four months, as Lilly has been in the hospital most of the time and she is having a hard time adjusting in her young life. I just pray for God to give her comfort through this time in her life as well.
6/10/08
Dr. Orchard, the Medical Dircector of Inherited Metabolic and Storage Disease Bone Marrow Transplantation Program is going to perform the rare transplant on Lilly. Dr. Orchard writes the protocal for the national treatment of this disease, and the protocal is currently under review by the medical board, as it has been revised and improved.
Christal, Lilly, and the children plan to be in Minnesota by the end of next week, and Tim and Christal are currently seeking housing solutions in Rochester Minnesota, which is where the Mayo Clinic is located. The hospital has mandated that they live within 20 minutes of the clinic due to the severity of the situation.
6/3/08
Lilly will be leaving for Minnesota soon to receive a bone marrow transplant. Her older sister Delilah is a bone marrow match, and undergo a procedure to donate her marrow to save her little sister's life.
How To Help
Donations to support the high costs of fighting this disease are greatly appreciated.
Checks can be made payable to and mailed to:
The Lilly Kulungian Bone Marrow Transplant Fund
Traditions Bank
121 White Oak Trail
Warrior, AL 35180
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