Ailing boy uses wish to visit pope. The day I met Christopher Sarage.

In my life I met some famous people, inspirational people, people who would move heaven and earth to help another. Whilst in the town of Uyuni last week, I got to meet one young man who will have the mightiest of fights in his life, a fight that started over 2 years ago. I felt honoured to meet him and his parents. I know the struggle the family will face, but I have no doubt they are prepared for the fight of Christopher's life. This is his story.

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,

The Sarage's 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.”

Christopher meeting 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 favourite team is from Argentina, where he’s from,” said Sarage. “Chrisito’s favourite 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 Sarage's 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 Sarage's 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 mum 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 centre 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 Sarage's 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.

2 years ago, 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 realise 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 realise 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 Sarage's 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 Sarage's early Thursday morning as Chrisito lay on the couch listening and confirming with a glee-filled look.

The couple said now , 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 Sarage's said they would like to move back to Greenfield permanently one day.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 specialised 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.

Meeting Chrisito will always be one of greatest highlights of my trip throughout South America. You can also email me at tbwall@hotmail.com is you wish to make a donation. I can guarantee it will reach the family.

I also handed Christopher an Australian jersey as a keep safe of our meeting.

Friday 10^th October 2014. Stage 54b, Tupiza to La Quiaca, 93 kms, paved 100%, climbing 1298 metres, summit 3540 metres.

We woke today to a very warm morning with not a cloud in the sky. I was really looking forward to taking it easy on the bike and enjoying my last day in Bolivia. Today we cross over the border into Argentina, the land of Lionel Messi and the infamous Diego Maradona. The reason I was going to take it easy was because I was very sore from my mammoth 5 hour walk into the wilderness yesterday. Because my legs and cheek muscles ached so much, I knew I was going to suffer big time today, and we had to climb back to the Altiplano. If you're ever invited to go for a walk with Elizabeth, don't do it, especially if you intend to ride 95 kms the next day. Putting aside the pain, we did get to see some amazing landscape and met up with Roberto and Maria along the way.

The tour rolled out of Tupiza around 8.30 am and I rode with Barry, Jurg and Rien. We stopped a couple of times for photos but took it easy. I took an extra stop and the boys rode off which is normal on these types of tours. You ride with some for an hour and then you ride with others for another hour. It's a great opportunity to meet everyone on tour. The major climb of the day started around 20 kms and went up for 15 kms. It wasn't steep but I didn't have anything in the legs. People passed me and I didn't care, it was 45 kms to lunch and that was my target for the morning. The landscape was not starting to change, from flat desolate landscape to greener fields, greener mountains, and more importantly a nice tailwind.

I arrived at the lunch stop on my own and there was already a couple of cyclists sitting down tucking into some good home made bread rolls. I'll have to remember to bring my cap with me and put it in during lunch because we are going into hotter temperatures over the next couple of weeks.

After lunch I rode with Alec and Julia. Alec had a spectacular crash on the Stelvio, 2 years ago, one of the famous mountains in Italy and also used each year during the 'Giro d Italia'. The crash was so bad he had to be airlifted off the mountain and spent the next week in a coma. I'm amazed the guy is still riding.

As the 3 of us headed off to the Argentinian border, Alec was powering along and my legs were feeling it. Julia dropped off after a couple of kms and we kept going. On each rise Alex would get out of the seat and push as hard as he could all the way to the top of the rise. Although I managed to stay with him I never let on I was stuffed and needed an oxy reviver kit just to breath. Oh well, we pushed on at about 40 kph till we reached the border where we found a couple of cyclists spending the last of their Bolivianos. I ended up exchanging my money with the exchangers for Pesos. I got a rate of $1 US = 12.5 pesos. The Government rate is $1 US = 8 pesos.

After getting our money exchanged we then had to go through one of the slowest border crossings in history. All the cyclists got in line with the locals to first go through the Bolivian immigration control. Robert the boss was ahead of us in the queue and he had moved about 10 metres in 1 hour. I can't believe that at a major border crossing in South America they only have one immigration officer doing all the work. As more of the cyclists turned up many of them jumped the queue and got with us which saved a huge amount of time.

Once the exit stamp was in the passport we then moved a metre to the next window. This was the Argentinian border control post. I've been through border controls in Africa which are sometimes kms apart, this one is 1 metre. Another stamp was obtained and we were in Argentina. There was a sign once we entered Argentina which read, 'Ushuaia 5121 kms. That's all I have to ride to reach the end of the world.

It was a short ride to the hotel and a nice hot shower. Once again the Wifi doesn't work in the place and that's the reason why no updates.

Later in the day myself and Robert the boss went back over the border and into Bolivia to exchange more money. We knew that with a large sum of money we would get a better rate. Without disclosing how much we exchanged, we got $1 = 13.85 pesos. That was worth the trip. Once we had our pockets stuffed with money we had a look around the markets and headed back to the Bolivian border control. Thankfully no one was waiting and we got through and into Argentina in no time.

We went back to the hotel and had a great meal of chicken, rice and chips. The bill came to about 70 pesos, which in Australian terms was about $6 AUS. We sat around with all the other cyclists chatting about everything and anyone we wanted to have a crack at. It's just the Aussie way of life, taking the p....ss out of people.

All in all it was another fantastic day on the road.

Until tomorrow, safe riding.

Saturday 11^th October 2014. Stage 55, La Quiaca to bush camp Quebrada de Humahuaca. 119 kms, paved 100%, climbing 580 metres, summit 3780 metres. Brilliant team work lands Patrick De Vries 1^st win of the tour.

I slept like a bear last night. Breakfast was set for 8 am today and Barry and I woke up at 7.40 am. Now that's the way it should always be. With a quick pack I was ready for brekkie and sitting down to cereal, juice, a pastry and coffee. Not a real good meal when one is going to ride 119 kms at over 3500 metres.

In any event, we packed the fire engine and headed out of town at 9.15 am. There was huge bunch of riders at the start which is a pretty cool sight to see rolling along the flat roads of Argentina. As I was riding along Joost came up to me and said he wanted Patrick to win the stage. As an old professional cyclist I knew how to do the job and try and help out. I spoke to Rien and Patrick and decided that us 4 would work together and get Patrick the victory before he leaves the tour in 2 days time.

At the end of the ride I spoke to James and Elizabeth who were riding together and both wandering why the group was rolling along without any aggression for the first 20 kms. Both of them thought something was going on. How correct they were. Patrick attacked from the back of the bunch and Joost quickly followed. I sat back as it was my role to keep both James and Alfred in check and follow their moves.

James then jumped out of the bunch and I quickly got on his wheel. He chased really hard and there was no way I was going to come around him and give him a hand in the chase. Alfred the other danger man chased us down and Rien followed him. For the next 5 kms James and Alfred chased as hard as they could to pull Patrick and Joost back into the peleton. Eventually we all regrouped and then there was Patrick, Joost, Rien, myself (the people all working for Patrick) Alfred, Hartmud who was working for Alfred, and James.

With Patrick being protected from the wind and not having to work in the bunch, I decided to do what all cyclists hate and that was when James did a turn and to the back of the bunch I rode really slow as Joost, Rien and Patrick accelerated. This caused myself, James and Alfred to go backwards and be dropped. With James tiring, Alfred took off with me right on his wheel in the chase for the boys ahead. I told Alfred I couldn't help him and that if he wanted to catch them he would have to do it on his own. James was now disappearing behind us.

After about 20 kms of chasing James came back to Alfred and myself and they both worked hard to peg them back all to no avail. With the fire engine in the distance I knew that we had done our job and Patrick won the stage. It was fantastic to see him with that huge smile on his face. He was grateful for all the work we did for him today but still he had to stick with Joost and Rien who are the 2 strongest guys of the tour.

With a good lunch we had a nice afternoon ride to our bush camp. We did stop at a small town for a drink and some chips and continued our chat on our marvellous achievement on winning the stage. I know it's not a professional race but we rode the same tactics as I did years ago. 3 guys working for 1 rider, against 2 other riders should always come out on top.

The last 15 kms was all downhill to a nice bush camp nestled on a ridge looking down onto the world famous Rio Grande. I made my way down to the river and took a nice swim to wash off the layers of sunscreen and a little bit of dirt. That was my wash for the day.

We had a really nice meal for dinner and sat around chatting till it got too cold and windy. It was time to hit 'Tent Hilton' do some typing and get ready for 150 kms of more pain tomorrow.

Until tomorrow, safe riding.