Tommy Cassell|The Milford Daily News
Emily Viti knew something wasnt right when she held her newborn son for the first time in 2013.
The first thing I felt was a lump on his back and I said Whats this? shesaid.
After countless medicalvisits with doctors and specialists for a little over a year, Viti finally discovered what was wrong:her sonhad mucopolysaccharidosis (MPS), a rare disease in which the body can't break down sugar molecules.
The condition, which affects one in 100,000 babies, is terminal.
It rocked my world, said Viti, the Framingham High boys and girls volleyball coach.
Her son, Christopher Hohn, is now seven years old. And Viti isfighting to find a cure.
Something terrible, terminal
There were other unhealthy signsover the first year of Christophers life.
His thumbs were still inside of his hands at three months andhis hips were shallow. He never slept for more than two hours and when he did, he made a very loud sound like an adult snoring.
Everybody said it was normal, said Viti, 44. By the time he was four months old, we had a list of six or seven things that were concerns.
We were just told repeatedly, repeatedly, repeatedly that everything was normal.
By Oct. 18, 2014, when Christopher was just over a year old, Viti scheduled an appointment for him at what is now Tufts Childrens Hospital in Boston.Aroutine visit turned into an 11-hour stay for Viti, her son and her partner, Darren Hohn.
I remember at one point Darren and I were looking at each other and thinking that this isnt good, Viti said.
Emily and I looked at each other and said Whats going on here? said Hohn, 46.
Around 8 p.m., Hohn and Viti were told their son had a lysosomal storage disease. Doctors said the best case scenario was that Christopher would live to be 25. The worst case: Hed die in a fewmonths.
I was like, What? Viti recalled. Although he had these issues, they all seemed so small. It never occurred to me that it could be something terminal.
We were numb about it, Hohnsaid. For the first week, there was a lot of sadness. Im not a crier and I cried my eyes out. Thats my kid. Thats when you get in the mindset of give me cancer or give me something so my kid can live a normal life.
Doctors urgedHohnand Viti not to Google anything until they received an official diagnosis a few weeks later. But Viti scoured the internet as soon as she got home on Oct. 18, 2014.
I did an MPS Google image search and the picture looked just like Christopher, Viti said. At that moment, denial was out the window and I knew MPS was what Christopher had. When you research MPS, its not a good situation.
I was having a total meltdown on the living room couch.
Two weeks later, on Halloween, doctors confirmed the diagnosis.
Enzyme replacement therapy (ERT) infusions were then scheduled for Christopher before he underwent a stem cell transplant the day after Christmas. Following his transplant, which included 10 days of chemotherapy, Christopher was sent home in February and ordered to quarantine for a full year in order torebuild his immune system.
If he wanted to see anybody, it was through a window, his father said.
Hohn was in the process of renovating their house in Milford when his first-born son was diagnosedwith MPS. In order for Christopher to return home from the hospital in February of 2015, the remodeling had to be finished and the house had to be prepped for quarantine.
So Hohnaccelerated his renovation timetable.
My whole thing with renovating the house was rapid, hesaid. I had help from friends, neighbors, they knew the situation. It was pretty hectic, pretty crazy, but I got it done.
For the rest of 2015, Hohn, Viti, Christopher and their dog, Norman, were in a somewhat strict quarantine as Christopher recovered from his stem cell transplant.
Only two other people were allowed to be a part of theirbubble and there were certain restrictions Hohnand Vitihad to follow. They couldnt have things like sponges, cats or living plants, among other things, inside their home. The family couldnt buy a tree for Christmas and their dog was only allowed to go outside in their backyard.
Trips to the grocery store and to Framingham High volleyball games and practices were the only reason why Viti left her home for a year.
That was a really difficult time in our lives, said Viti, who teaches health and physical education at Framingham High. It was the extreme of what people are doing now. Quarantining like this is sort of like small potatoes compared to what we had to do.
This is easy living right now.
Playing with a purpose
A few months after Christophers quarantine was lifted, Viti helped steer the Framingham High boys volleyball team to its first ever state championship with a 3-0 win over Needham on June 15, 2016.
After the victory, Christopher tugged at the pant leg of his mother on the volleyball court at Concord-Carlisle High School. Viti lifted himup and placed a championship medal around his neck as she fielded questions from reporters.
They have rallied around Christopher, Viti told the Daily News at the time. Ive always thought that if Christopher cant play sports when hes older or whatever, he still has a team that he belongs to. They have MPS on their jerseys, they have MPS socks on. Hes part of their team. And I think that that is unbelievable.
A year prior, six players from the Framingham High boys volleyball team quit. It was a rough stretch for Viti as she juggled running her volleyball program and raising a son in quarantine. So winning the state title a year later was a sense of validation for Viti and her remaining players, who played with a greater purpose in 2016.
Were playing for Emily, everything shes been through, said former Framingham High libero Jason Shapiro after the state title victory. Shes been through more than anyone I know. All of this is for her.
I know that well all remember this season for the rest of our lives.
Just a normal kid
Christopher currently is a first-grader at Brookside Elementary School in Milford. Hes taking classes remotely due to coronavirus restrictions at his school.
Each morning he wakes up by 7:30and watches TV and eats breakfast before his virtual classes begin. Throughout the day, he enjoys play breaks with his younger brother, Jacob, who is also learning remotely. In the afternoon, Christopher completes his school work with some assistance from his mother.
Its fun, Viti said. Its busy.
To this day, Christopher has undergone more than a dozen different operations including one last year to remove thelump on his back.
No child should have to go through 13 procedures or more, his fathersaid.
Some people with MPS are small in stature. Christopher is 43 inches tall and weighs 45 pounds. Jacob, who is two years younger,is only an inch shorter.
Hes definitely starting to notice that hes the smallest, his mothersaid.
Christopher likes to ride his bike, eat ice cream and run around with his friends. He does scamper with a bit of a limp, though.
He walks like an old, arthritic man, Viti said.
Christopher has an old soul, too, especially when it comes to music. He enjoys The Beatles, Bob Marley and Twisted Sister. He dressed up as Dee Snider, Twisted Sisters lead vocalist, for Halloween this year.
Hes a character, hes certainly a character, Hohnsaid. He knows how to run a crowd.
Christopher is charismatic, incredibly funny and I think hes one of the deepest, most sensitive people Ive ever met, Viti said. I always say he has an over-developed sense of empathy.
Each October, Christopher and his family participate in a fundraiser called Smash out MPS at Cedar Hill Farm in Mendon.
During this years event on Oct. 17, the mother of one of Christophers former caretakers accidentally dialed 9-1-1 on her phone. So Mendon police officer Nick Erskine showed up to the picturesque farm unannounced.
After Erskine realized he received an accidental call, he introduced himself to the center of attention.
Whats going on? Having some fun today? Erskine asked Christopher.
Christopher proceeded to put his hands up in the air and knelt to the ground in front of the officer. His joke elicitedlaughterfrom the crowd of people, which included former Lincoln-Sudbury head volleyball coach Judy Katalina.
Katalina, who became friends with Viti through volleyball, has a tattoo on her right arm that commemorates Christopher. Katalinas tattoo features a purple ribbon with Christophers initials inked in black and the word Believe etched in black below.
Christopher is just a little spit-fire, Katalina said. Youd never know that he was sick because he just loves to live and hes just a good kid.
After Christophers antics, the police officer showed the seven-year-old where all the bad boys sit in his police cruiser before presenting himwith a voucher for free ice cream.
Im going to show this to my parents, Christopher said.
Later on, Viti thanked the crowd for showing up to support her family's effort toraiseawareness for MPS before Christopher chimed in.
Lets get smashing! he yelled.
The pack of people proceeded to smash purple-painted pumpkins on the ground. The event raised $700 in hopes of helping to find a cure for MPS.
This little boy is such an inspiration to many and he never lets it bother him, said Michelle Manoogian, who owns Cedar Hill Farm with her husband, Mark. (Christopher) is just a normal kid with a giant heart.
As of right now, Christopher doesnt have any procedures scheduled. His parentsbiggest fear is always the next operation.
Despite the grim prognosis,Emily Viti and Darren Hohn aredoing whatthey can to provide a normal life for Christopher. All while raising awareness about MPS inhopes of finding a cure.
I want him to be a well-rounded individual, Hohnsaid. I want him to live as a normal child and a normal teenager.
I want him to be able to enjoy life even though he is in pain, Viti said. Everything is against him and he just keeps fighting. Hell do anything and everything.
(If you'd like to donate to the National MPS society, please click here.)
Tommy Cassell is a senior multimedia journalist for the Daily News. He can be reached at firstname.lastname@example.org. Follow him on Twitter @tommycassell44.
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