His favorite toy is his “night-night bear,” but if little Alex doesn’t get his transplants, he won’t live long enough to keep playing with it.

Christian Alexander Avery, a brown-haired, blue-eyed, 21-month-old boy from Ames, is in need of a liver and a small-bowel transplant.

Born Dec. 9, 1994, Alex has spent the majority of his life in hospitals. When he was born, doctors diagnosed him with a rare disease called Micro Villas Inclusion, meaning he has no villa in his bowel tract to absorb or digest food.

The disease is so rare only one article had been written on it at the time. Doctors said the only cure for Alex was a bowel transplant. Shortly after this diagnosis Alex’s liver, which was failing due to extended use of an IV fluid, was approved for the transplant list.

Alex has been on the transplant list for a new bowel since he was two months old; he has been waiting for a new liver since November of 1995. Without these much needed transplants, Alex will have only two to three more months to live.

“It’s been two years of heartache. Alex has been close to death three or four times. When you have to sit by and see your child dying, it’s really, really hard,” said Christine Avery, Alex’s mother.

Christine, who is 19 years old, said the estimated cost of the two transplants is $700,000. After months of writing letters to their insurance company, Christine said they were able to convince them to pay for the transplants because of the experimental research value.

However, post-transplant drugs and prescribed formulas are not covered. The Avery’s must also deal with the expense of reserving a private plane on 24-hour standby to fly their son to Pittsburgh in case a donor is found.

“I wish there was something somebody could do to make it all better for him. A little bit of the community’s support would be great,” Christine said.

She hopes students and organizations on campus will help Alex by fund raising for him.

“We were hoping someone would like to ‘adopt-a-brother’ and help raise some money for Alex,” Christine said.

Alex requires fresh, frozen plasma everyday — one of the reasons he does not live at home. His disease also makes his bones very fragile. He can not be lifted under the arms or he will get bruises. In the past Alex has broken a shoulder, ribs and his clavicle bone from normal playing.

Despite his failing health, Alex lives a pretty typical toddler life at his new home in Blank Park Children’s Hospital in Des Moines.

Christine said Alex gets up whenever he wants in the morning, usually around 8:00. “He has to watch ‘The Price is Right’ everyday, then ‘Sesame Street,'” she said.

He spends his time playing with other terminally-ill kids in the playroom and doing physical therapy, which recently helped teach him to crawl.

“We got out the video camera. It was the biggest thing in the world to us,” Christine said. Alex was never expected to live, let alone learn to crawl.

At night Alex insists on watching Tom Brokaw, “Jeopardy” and “Wheel of Fortune.” When he sees Vanna on the screen, Christine said he claps and yells, “Go Vanna.”

Christine said her son was born with a smile on his face and is very good-natured.

“Alex doesn’t cry, he lets the doctors examine him. He takes it. He’s so strong. His will is probably a bit stronger than mine.”

Christine’s husband, Val Avery, is an junior at ISU in computer science and management information systems. He described Alex as “real energetic and a lot of fun. He’s very personable, he’s definitely a people person.”

Val said it has been difficult trying to juggle classes, work and care for his son. He said Alex is a responsibility “you just can’t plan for.”

One thing Val and Christine can plan on is the birth of their second child who will be named Andy and is due next week.

No one knows if Andy will be born with the same disease that is taking his brother’s life. Christine said if it is a genetic disease, the chances of their second child being born with it are one in four.

However, no doctors have diagnosed the disease as a genetic disorder, so Christine said they will just have to wait until he is born.

“When I was younger, they told me I had a one percent chance of ever having children. So when we found out about Alex we were just thrilled.

“We made all of the deals with God. We wanted a boy so bad so Val could have a namesake, and we knew it might be our only chance. I guess all we forgot to ask for was the healthy part.”

Both parents said they hope their next child is healthy.

As far as Alex’s future, Val said all he wants is to get Alex his transplants and see his son live a happy life.

“That’s all I require. Both of my boys can do whatever they want. I want to be able to help them out, give them any opportunity I can,” Val said.

Christine said they have coped with Alex’s illness as best they could.

Although it did completely change her life, she said it has also taught her a lot.

“You have to do it for your child’s sake. It’s kind of a raw deal, but it has been a learning experience,” she said.

Anyone who is interested in helping Alex can call 296-7594 and speak with Christine.