A few of you have asked for an update on Addison. Unfortunately, things haven't gotten better for the little guy. Currently, he's in the ICU suffering from complications from the second bone marrow transplant and he needs platelet donations. (Normally, I would now start asking for A positive donors but the doctors want to utilize a steady supply from family to minimize complications. However, if you're A positive and willing to be a regular donor for Addison, let me know...you never know if your services may become necessary.)
The Bakersfield Californian ran this story a couple of weeks ago. (See below.) It also included a picture, but I couldn't bear posting it. Addison's appearance has changed so much since when I last saw him a few months ago; it absolutely crushes me. I can't help but selfishly thank God Parker's healthy. Then again, we thought Addison was healthy when he was Parker's age. Oy...don't get me started. Worrying becomes a vicious cycle.
Once again, please keep Addison in your thoughts and prayers.
'He's such a trooper': Boy battles bubble boy disease
Tehachapi toddler battling illness known as bubble boy disease at UCLA Medical Center
By NADA BEHZIZ, Californian staff writer
Addison Trillo almost never cries. The 30-month-old Tehachapi boy loves giving hugs and always has a faint smile when he wakes from his medication.
Addison takes 20 medications a day and just had his second bone marrow transplant. "He's such a trooper. He's our hero. You can kick him to the ground and he can get right back up," said Amy Trillo, Addison's mother.
He's been at UCLA Medical Center for six months suffering from Severe Combined Immunodeficiency Disorder, better known as the bubble boy disease.
People with the disease have low levels of T-cells, white blood cells that fight off infections. Without enough T-cells, the body cannot resist infections that can often result in death.
Usually, the disorder is treated with bone marrow transplants.
In one rare case in the 1970s, an infant lived in a plastic bubble to avoid germs when a marrow match wasn't found. But Addison doesn't live in a plastic bubble like the famed David Vetter, who lived in his germ-free bubble for 12 years.
In fact, Vetter was the only boy with the disease who ever lived in a plastic bubble.
Instead doctors are treating Addison with transplants using his father's marrow, hoping to build up his immune system so it can fight off infections. The prognosis isn't good.
The first transplant in February failed and there are complications with the second transplant.
His old T-cells and the new ones still are fighting to take over his body.
If this battle doesn't end in victory, it means round three of transplants.
"The minute you get excited and optimistic, something else bad happens," Mrs. Trillo said. "We're hoping we're not going to have to go through the third bone marrow transplant."
Addison's life is bleak. He has been confined to a bed in a Los Angeles hospital for six months. There are no children to play with. His only friend is his overstuffed blue rabbit, which sits on his bed. Mom stays with him most days and drives back to Tehachapi regularly. Dad comes when he can.
The toddler is so weak from infections that he cannot speak. When his father calls from Tehachapi and wraps up with a "I love you," Addison cannot answer back.
Research shows that about one in every 100,000 to 500,000 babies have the disease. But experts say the disorder is more common than that because many patients die before the disease is recognized.
Some experts say a simple, inexpensive blood test performed at birth to screen for immune disorders could dramatically increase chances of survival for babies born with the disease.
"The disease is a pediatric emergency," said Rebecca Buckley, a professor of Duke University Medical Center's division of pediatric allergy and immunology. "There is no screening for any primary immunodeficiency disease at birth or during childhood and adulthood in any country."
The National Human Genome Research Institute has developed a new test that detects the disease.
In Addison's case, it took almost a year for him to be properly diagnosed.
His parents took him to a number of doctors before he was diagnosed with the disease at UCLA in January.
"He was falling apart and they couldn't tell me what it was," Mrs. Trillo said. "My kid was dying and you're not going to sit around, you're gonna want a second opinion."
If a third transplant is necessary in Addison's case, doctors will draw from an umbilical cord blood bank instead of using his father's marrow.
Umbilical cord blood, routinely discarded after birth, is rich in stem cells, which can be used to treat many disorders such as Addison's.
Even without the third transplant, doctors expect Addison to stay in the hospital for at least two months to get his immune system up to speed.
If the transplants fail, doctors can't say what will happen to him.
So far, he keeps pulling through, and his parents plan to keep giving him the chance to do that.
"You have those moments that you get really down, but we can't lose him now," Mrs. Trillo said. "It's not going to happen to him, that kid has suffered too much."
