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Ailing boy uses wish to visit pope

  •  Christopher Diego Sarage, 11, Greenfield, meets Pope Francis via the Make-a-Wish Foundation of Massachusetts.

    Christopher Diego Sarage, 11, Greenfield, meets Pope Francis via the Make-a-Wish Foundation of Massachusetts. Purchase photo reprints »

  •  Christopher Diego Sarage, 11, Greenfield, meets Pope Francis via the Make-a-Wish Foundation of Massachusetts.

    Christopher Diego Sarage, 11, Greenfield, meets Pope Francis via the Make-a-Wish Foundation of Massachusetts. Purchase photo reprints »

  •  Christopher Diego Sarage, 11, Greenfield, meets Pope Francis via the Make-a-Wish Foundation of Massachusetts.
  •  Christopher Diego Sarage, 11, Greenfield, meets Pope Francis via the Make-a-Wish Foundation of Massachusetts.

GREENFIELD — Two years ago, Christopher Diego Sarage was a “normal” 9-year-old boy playing soccer, chatting up a storm with his family and having lots of fun with his friends.

Today Chrisito, as his family calls him — “ito” is a Spanish diminutive indicating affection — lies on the couch of a Thayer Road relative, who his family is visiting with, barely able to move and unable to speak.

But he now carries with him a memory of a personal audience with Pope Francis.

Chrisito communicates with his large, brown, piercing eyes and his bright, broad smile. Except for the obvious, you might never guess what he and his family have been through over the past two years.

“One day we were on vacation at a water park in Bolivia, South America when he told us he couldn’t see,” said his father Christopher Sarage, who grew up in Greenfield. “He’d been running around all day and it was about 100 degrees, so we thought the heat had gotten to him.”

Sarage, his wife Sussy, whom he met while the two were studying at the University of Massachusetts in Amherst in 1992, his 17-year-old son Alejandro, and 11-year-old Chrisito, are currently visiting Sarage’s brother on Thayer Road and mother Linda, who is just around the corner on Keegan Lane.

The family will be in Greenfield for a few more days before returning home to Uyuni, Bolivia, where they own a pizzeria called Minuteman Pizzeria.

The Sarages were in Rome late last month to visit the Vatican and Pope Francis thanks to Make-A-Wish Massachusetts and Rhode Island, which grants wishes to children with life-threatening conditions.

Sarage said his son had the time of his life.

“They offered him everything from Hawaii to Disney,” said his mother. “He has such deep faith that he wanted to visit the Pope.”

Chrisito, who was playing soccer just a day before tragedy struck, brought a soccer ball to Vatican City and gave it to the Pope.

“The Pope’s favorite team is from Argentina, where he’s from,” said Sarage. “Chrisito’s favorite team is from La Paz, Bolivia, where he was born.”

Sussy Sarage said in return Pope Francis spoke with Chrisito and the family, blessed their ailing son and gave all of them a little of their faith and hope back.

“Chrisito already had so much faith and hope,” said Sarage. “He keeps the rest of us going.”

Chrisito and his family learned shortly after that fateful day when he abruptly lost his sight in 2012 that he has Adrenoleukodystrophy, also known as ALD.

The disorder, which is caused by a mutated gene, severely affects the central nervous system. Two-thirds of those with ALD are presented with the disease in childhood and that version is the most severe form, leading to rapid degeneration and a vegetative state.

The Sarages said the disease moves quickly in some and slower in others. So far it appears it is moving more slowly for Chrisito.

Sarage said that day at the water park Chrisito told his parents and brother, “I’m scared. I can’t see.”

“We all freaked out,” said Sarage. “We rushed him to a clinic, which is what we call a hospital in the states, and they kept him overnight and did some tests.”

Sarage said Chrisito’s vision returned the next day and everyone was perplexed. The youngster spent four days in the hospital and had a seizure during that time, but still confused about what might be going on with him, Chrisito was released when he seemed to be getting better.

It was just as he and his family got ready to board a plane to their home in Bolivia that Chrisito had another seizure and his parents knew there was something terribly wrong.

“He spent another week in a Bolivian hospital far from home,” said Sarage. “It was crazy, a nightmare. We don’t have insurance there like we do in the states, so we had to pay for everything as we went; tests, medications, everything.”

The hospital did many tests, many painful, said Sarage. It was after results from an MRI came back that doctors found there were lesions on Chrisito’s brain.

“One doctor was looking at the pictures with us and said, ‘Oh no, it looks like ALD,’” said Sarage. “We wanted to know what that meant. They didn’t really explain, but they sounded very discouraged.”

The Sarages said they became the world’s best Googlers, and when doctors finally told them the only thing that might help their son was a bone marrow transplant, they decided to travel back to the states for it.

“We found one of the world’s leading experts on ALD was in Boston, so we came to Greenfield, left Alejandro with my mom so he could go to Greenfield High School for the year and we left for Boston,” said Sarage. “We lived in the hospital and a rehabilitation center for more than a year with Chrisito.”

The family arrived in Greenfield on Sarage’s mother’s birthday, Feb. 11, 2013. That Valentine’s Day — they hadn’t gotten an official diagnosis yet — they got a phone call with the bad news.

“Even at that point Chrisito was walking and talking and had made birthday breakfast for my mother a few days before,” said Sarage. “This was just unbelievable.”

The Sarages took their son to Massachusetts General Hospital in Boston where Dr. Florian Eichler met them to discuss the road ahead.

First, they had to find a bone marrow match for their youngest son.

“It wasn’t long before we learned that his brother was a perfect match,” said Sarage. “We were elated, but soon that turned to more bad news.”

The couple learned that Alejandro carries the same mutated gene, it just hasn’t attacked his body the way it has Chrisito’s.

“We were devastated,” said Sussy Sarage. “We were heartbroken.”

Still, it was Chrisito who kept the faith and told his parents everything was “going to be OK.”

When a match was finally found, it wasn’t perfect but was close enough, said Sarage.

After the transplant, which was a success, Chrisito had to endure chemotherapy.

“The first 10 days of chemo he was walking and talking and acting like himself,” said his mother. “Then, something happened. He got really sick and all of a sudden his speech was slurred and we couldn’t understand him.”

Neurologists were called in, and doctors said they were going to call Make-A-Wish Massachusetts and Rhode Island.

“We didn’t know what that meant, but we didn’t think it sounded good,” said Sarage.

During his first encounter with Make-A-Wish, Chrisito asked that his grandparents be flown to the states from South America for a visit, but that didn’t work out.

By the time Make-A-Wish visited for the second time, Chrisito had lost his ability to speak and asked for a computer that would allow him to communicate, but the family soon learned that insurance they had purchased when they returned to the states would pay for such a computer.

Finally, it was on the third trip to see Chrisito that Make-A-Wish learned the young boy, who has always had a deep faith in God, wanted to visit Pope Francis, said Sarage.

Last week, the family returned from the Vatican, where they had attended a mass for thousands of people suffering with different ailments.

“It was difficult to see 1,000 children in wheelchairs,” said Sarage. “But it makes you realize you aren’t going through this alone.”

“Chrisito has had such a spirit through all of this,” said his grandmother, who waited back in Greenfield last week for their return. “Chrisito has an amazing spirit.”

Sarage said during the bleakest moments over the past two years his son has shown the most amount of faith of anyone and has pulled the rest of the family through, even though he cannot walk, talk, dress himself or speak.

“He gets very determined, though,” said his mother. “He’ll be upset with me and I can’t figure out why. Then, all of a sudden I’ll realize that he is upset because I picked him up to carry him somewhere and he wanted to try to do it himself.”

Chrisito may never talk or walk again, but he is determined to give it everything he’s got, they said.

“Before this happened, he was always the one to walk by a church and cross himself,” said Sarage. “He was the one who reminded us to say grace before a meal. So it didn’t surprise us when he said he wanted to meet the Pope.”

Catholics, the Sarages said they are and always have been church-goers, but it is Chrisito who has always reminded them to not just talk the talk.

“The trip was incredible,” said Sussy Sarage.

“It felt like a dream,” said Chrisito’s father. “It was fantastic.”

They said Pope Francis met with them and their son after the mass.

“He kissed Chrisito, blessed him and we just talked about different things,” said Sarage. “I could see how happy it made my son. He’ll never forget. We’ll never forget.”

Make-A-Wish Massachusetts and Rhode Island volunteers picked the family up and dropped them off at the airport, transported them to wherever they wanted to go throughout the week and made sure their week was the best it could possibly be.

“It was,” said the Sarages early Thursday morning as Chrisito lay on the couch listening and confirming with a glee-filled look.

The couple said now that Chrisito has had his wish fulfilled and the family is headed back to Bolivia, they’re not sure what the future holds for their son.

“The disease seems to be progressing slowly at this point, so that’s good news,” said Sarage. “We’ve actually seen tiny improvements.”

Chrisito’s mother said she has seen some movement in one of his fingers.

“That’s going in the right direction,” she said. “It’s amazing how something that small can make our day.”

The Sarages said they would like to move back to Greenfield permanently, or at least for the next several years, but will need to find family or friends in Bolivia who are willing to run their pizzeria long-term.

They said they’ll go back to Bolivia and try to work out all of the details of a move back to the states. They’d like to be close to Boston, just in case Chrisito needs more specialized care.

Along with the soccer ball, Chrisito and his family delivered a message to Pope Francis.

“We told him that Bolivia is praying for him,” said Sarage. “He answered, ‘I need it!’ and kissed Chrisito on the forehead.”

Linda Sarage said her grandson’s journey is one of faith and hope.

“I agree,” said his father. “When the world seems rough and tough and things are bad, there’s an 11-year-old boy who can inspire people with his faith. He never gives up and he reminds all of us that we’re never alone.”

If you would like to send well wishes or donations toward his care, send them to: Chrisito Sarage, care of Linda Sarage, 1 Keegan Lane, Greenfield, MA 01301. She will then forward them to Bolivia.

Oh the faith of a child. Jesus said let the children come to me and do not hinder them for such is the kingdom of heaven. if we could all have just a small amount of the faith as CHrisito and his family, how much more content we would be. Bless you Chrisito and your family. and God Bless our wonderful Pope

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