DESTREHAN, La. -- A teenager from Destrehan has two life-threatening illnesses, and Wednesday afternoon local doctors began a treatment they hope will save her life.
It is the first time it's being tried on someone with two conditions. But there is a twist to the story that brought two families together.
It's a big day for Madison Tully, 16, the day when she gets a procedure that could save her life.
"It's like excruciating pain and like, you can't describe it. And it's very hard to deal with because sometimes I just don't want to live anymore because I can't take it and it's very hard," Madison said, crying.
Madison is one of only 12 known people in the world who has both sickle cell disease and lupus. Both are genetic conditions. The sickle cell was discovered at birth. The defect in her red blood cells cause a lack of oxygen to all of her organs, and she is in pain.
The lupus was just found last year. It causes her own immune system to attack her organs as if they were foreign invaders like a virus. But now there is a chance for a cure of both, with a bone marrow transplant.
"We hope for two different things," said Dr. Julie Kanter, a Tulane pediatric hematologist and oncologist. "So one of the things the new bone marrow will do is produce new red blood cells that contain normal hemoglobin, not the sickle hemoglobin, which should replace the ones she has and completely get rid of her sickle cell disease. In addition, because this new immune system (the donor's) does not have that abnormal auto immune response, it should cure her lupus as well."
There is no record in the scientific literature of this ever being done before. But what makes Madison even more special is that she was adopted at birth by the Tully family in Destrehan, so the search for a bone marrow donor needed to come from her birth family.
"Madison is a bit of a miracle. She is a mixed heritage patient (White, Black and Hispanic) and that can be very difficult to identify a perfectly matched sibling. And her sibling is a 10 out of 10 perfectly matched sibling," explained Dr. Kanter.
Her birth sister, Jasmin Thomas, 17, lives in Metairie with her biological mother Karen Arevalo, who is also Madison's biological mother. They have the same biological father.
Jasmin did not know about Madison until a couple of years ago, but has come forward in hopes of saving Madison's life.
"I'm just hoping that it will get us more closer together, because all these years we never really talked, and now it's like I feel more closer to her," said Thomas, who found out she had a biological sister at a party when she was 14.
"It means everything. It really does because she's young and everything, and then she's like, she really wanted to do this for me and I really appreciate it, because she could be saving my life," said an emotional Madison.
Her parents are thankful they had an open adoption with her birth mother.
"It's now all the suffering can be ended. It's, to us, it's Easter Sunday after good Friday," said Jeff Tully, Madison's father.
"It's wonderful. I feel that her birth family is just more people to love her," said Roxanne Tully, Madison's Mother.
"I'm happy and proud to have picked Miss Roxanne and Mr. Jeff, because I don't regret it at all, because they have been so good to her," said Arevalo about giving up Madison for adoption when she was born.
Madison has a long way to go. She's staying in a special sterile unit at Tulane Hospital for Children. It is high risk for her, but doctors have hope. And Madison has hope of looking like herself again when she's not swollen from medication. She said it's been hard gaining 30 pounds from the medication, because some of her friends, especially boys, treat her differently.
One day in the future, Madison wants to return the favor the doctors have done for her to future patients.
"I think that's what God's telling me to do right now, because one day I just had a weird feeling and then I was like, 'I actually really want to become a doctor, a kids' doctor,' " said Madison.
After all she's been through, she would understand what the patients are feeling when they say it hurts.
"Yeah, I would be like, 'I've been there.'"
Doctors say sickle cell illness is checked in all newborns and medicines can help children with the symptoms.
Bone marrow transplants have helped people with only sickle cell or lupus, but never with both at the same time.