Niccolò (12) will soon die:

Got his greatest wish fulfilled.

Niccolò (12) knows that he will die in a matter of years. The boy, who suffers from an extremely rare disease, finally got his big dream fulfilled in New York - all thanks to a woman from Levanger, Norway.

ARTICLE PUBLISHED IN VG HELG (Norway) - 8 PAGES
BY MARIANNE VIKÅS, PER OPSAHL, THOMAS NILSSON (PHOTO)
PUBLISHED 12th OF NOV. 2016

The smile on the little boy’s face can hardly get any wider, as he spots who’s entering the room.

– Buddy!

Niccolò Gherardi is usually quiet, but now he raises his voice several notches from the stool he’s standing on. His little brother is smiling just as widely, their mom’s eyes fill up with tears, and the father savors the moment on his iPhone.

In their apartment in Milan, the brothers Niccolò and Alessio usually to sit down when it’s time for “Cake Boss” on television. Now the boss himself, Buddy Valastro, stands in front of them.

Niccolò is born with the extremely rare disease Progeria, which affects only one of eight million children. A tiny change in the DNA causes aging to begin at the age of two. Life expectancy is on average 12 to 14 years.

Now Niccolò is 12.

 

– INCREDIBLE TO CONTRIBUTE

Next to Niccolò’s mother stands a 37 year old Norwegian woman.

FØDT MED PROGERIA: Niccolò Gherardi (12) fra Italia har den ekstremt sjeldne sykdommen Progeria, som rammer kun én av åtte millioner barn. Foto: THOMAS NILSSON, VG.
BORN WITH PROGERIA: Niccolò Gherardi (12) from Italy has the extremely rare disorder Progeria, which only affects one in eight million children. Photo: THOMAS NILSSON, VG.

Happy tears flow down her cheek. A few years ago, she changed her name to Miss Skoom, which is also her artist name. The Levanger woman lives in New York, and works as an artist.

MØTTE HELTEN: Niccolò Gherardis største ønske var å møte «Cake Boss» Buddy Valastro. Nylig gikk drømmen i oppfyllelse. Foto: THOMAS NILSSON, VG.
MET HIS HERO: Niccolò Gherardi's biggest wish was to meet «Cake Boss» Buddy Valastro. Recently his dream came true. Photo: THOMAS NILSSON, VG.

– When Niccolò’s mother said his greatest wish was to meet Buddy, I believed that it could happen. To see how he smiles like he does now, means everything. Knowing that I can help fulfill the desire for a terminally ill child is indescribable. And makes it worth all the e-mails, phone calls, meetings and sleepless nights to try to make it happen.

For four months she has been working to fulfill the 12-year-old’s dreams.

In many ways, the story of her involvement begins at St. Olavs Hospital in Trondheim, Norway, in the fall of 2000. Her uncle was laying on his death bed, and on her way out of the hospital she had to go through the pediatric oncology ward. There, she met a sick teenage boy who recognized her. In January of that same year, she had released a single on Sony Music and frequently been in the media.

–The boy came rolling with an IV stand, didn’t have hair, and was blue under his eyes. It was the first time I met a child with cancer. He asked me if I could be so kind and sing for him.

That’s where it all started. The Levanger woman started volunteering, including at the Children’s Hospital in Los Angeles and Ronald McDonald House.

ILDSJEL: Miss Skoom fra Levanger har et brennende engasjement overfor barn med Progeria og deres familier. Foto: THOMAS NILSSON, VG.
PASSIONATE: Miss Skoom from Levanger has a burning commitment to children with Progeria and their families. Photo: THOMAS NILSSON, VG.

WORLD FAMOUS «CAKE BOSS»

The first time she heard about the disease Progeria was around 2003, when she watched a TV documentary about four-year-old Hayley Okines from England. The 37-year-old began to read up on the disease: How a change in the DNA forms an abnormal protein that causes the children to grow on average eight times faster than normal. At the age of four, they begin to develop arthritis.

“I was very moved,” says the Levanger woman.

Through her work with children with cancer, she knew how difficult it was to raise money for the cause. She could only imagine how hard it was to get support for such a rare disease.

Today, Miss Skoom uses all of her spare money – and much of her spare time – to help these children and their families.

SANG FOR HAYLEY: Miss Skoom så en dokumentar om Hayley Okines fra England og da var engasjementet tent. Her er de sammen på en gjenforening for barn med Progeria i 2013. Hailey døde i april i fjor. Foto: JASON FRY.
SANG FOR HAYLEY: Miss Skoom saw a documentary about Hayley Okines from England. That sparked her commitment. Here they are together at a reunion for children with Progeria in 2013. Hayley died in April of last year. Photo: JASON FRY.

The Pokémon’s are many in the streets around Times Square in Manhattan. While waiting for the car to pick us up, the brothers try to catch as many as possible. Niccolò is in his stroller, his three year younger brother is standing close by. The disease makes it difficult for the 12-year-old to walk.

– What do you like most about «Cake Boss», Niccolò?

– Everything, says the 12-year-old a little shyly, before he smiles and adds:

– And, that he has Italian roots.

Niccolò knows we are going to visit Carlo’s Bakery and the cake factory where «Cake Boss» is recorded, but he still does not know that he will soon meet his big hero, bakery owner and reality celebrity Buddy Valastro (39).

The 12-year-old and the family are in the United States for the annual treatment at the Boston Children’s Hospital. When the Levanger woman heard they were coming Stateside, she asked them to set aside three days extra in New York. And to leave the credit cards at home. She promised that she would do everything to plan three days of experiences, that Niccolò and his family would never forget.

FAMILY TRIP: Every other year, Niccolò Gherardi (12) travels to Boston with his family to get treatment. This time, he also got three dream-days in New York with his father, Andrea Gherardi (41), his mom Oriana Villani (41), and his little brother Alessio (9). Photo: THOMAS NILSSON, VG.

«Cake Boss» is a world-famous reality series about the Valastro family, who run the bakery in Hoboken, New Jersey, making the most creative cakes you can imagine – in addition to traditional Italian pastries.

– The kids love «Cake Boss», but they are not so fond of cakes. I’m not good at making them either, says the mom Oriana, laughing.

DNA TEST WAS A SHOCK

The sweet smell of cakes hits us as we get out of the car outside the bakery.

– You can choose exactly which cake you want.

Buddy’s sister, Maddalena Castano, welcomes Niccolò and points to the big counter filled with masterworks of cakes, cup cakes, biscuits and other sweets.

– I’d love to have that one, Niccolò cautiously points to a muffin with an oreo glaze.

– It’s my favorite too, says Castano, asking the boy to pick it up.

One of the characteristics of children with Progeria, is that they stop growing in early childhood – so, with his 40.5″ inches and 29.3 pounds, the 12-year-old disappears as he walks behind the counter.

That something was wrong with the baby, parents Oriana Villani (43) and Andrea Gherardi (41) began noticing when Niccolò was four months old. After many doctor’s visits, finally a DNA test gave them answers.

– It was a shock, says the mother.

HJELP: En lillebror er god å ha når beina blir for slitne. I en alder av fire år begynner barn med Progeria å utvikle leddgikt.Foto: THOMAS NILSSON, VG.
HELP: A little brother is good to have, when your legs get too tired. At the age of four, children with Progeria start developing arthritis. Photo: THOMAS NILSSON, VG.

They knew nothing about Progeria, and the information they were given was gloomy.

– But now we have known for eleven years, and we have lived our lives as normal as we could. We have to do it that way, she says.

NO CURE

Miss Skoom never forgot the British girl with Progeria from the TV documentary. In 2013, she contacted Hayley’s family, and was invited to England and taken into the warmth. She was asked if she would attend an annual event, a reunion for European children with Progeria and their families.

Today, we know about 124 children who have this disease. 23 of these kids live in Europe – none in Norway.

For the last three years, Miss Skoom has participated in the reunions and helped to raise money. In these years she has also visited several of the families and contributed to fulfilling some of the wishes of the children. She says she does not earn money on the fundraising, but is working on a documentary about her work with the sick children.

– There is no cure for these children. The children with cancer that I worked with, they have a survival rate of more than 70%. But, we do not know if the kids with Progeria are here tomorrow. That’s the reason I’m so dedicated to helping the families, because it’s like the parents say: The most important thing is to see their children smile and have a good time, while they are still with us, says the 37-year-old.

ZEST FOR LIFE: Miss Skoom's big mission is to make life better for children with Progeria. Here she is together with some of them in a recording studio in the Netherlands. Photo: BENNO NEELEMAN.

At the reunions, she usually performs with songs and music.

– The first year I sung for the children on their last evening. There are mixed feelings at the farewell party, because the kids know that at least one of them is not there the following year.

In April of last year, she played at Hayley Okines’ funeral.

– HIS GREATEST DREAM

– There, now you’re official, Buddy Valastro says to Niccolò, and fits the boy with a «Cake Boss» apron.

He has inspected the cake the 12-year-old has decorated with confectioner Liz White: A cake with fondant in the Italian colors. Niccolò also wanted soccer balls on it – and soccer balls he got.

With a big smile on his face, and green icing in the piping bag, he gets to shape what looks like grass. It’s not entirely even, but the 12-year-old is just as satisfied.

– It’s supposed to be like that, because it was windy that day, he says, laughing with his whole body.

The busy bakery owner has to hurry along quickly, but gives a clear message to his employees before leaving:

– Give that guy everything he wants.

To VG, Valastro says he was not in doubt when he received the request from the Norwegian woman.

– It touches me when children have a desire to meet me, and that it is a big deal for them. It’s impossible to describe how good it feels to fulfill a wish for a child like Niccoló, he says and continues:

– It puts life in perspective, and you are reminded of what is really important in life. I have children, myself, and know how much it would mean for them to fulfill a dream.

Next to him stands a touched mother.

– This means so much to Niccolò. It is a dream come true. His greatest dream.

BAKING CHAMP: At the cake factory, Niccolò got to make his own cake - in Italian colors. Photo: THOMAS NILSSON, VG.

DONATING TIME

“Smile! Yes, yes! “Photographer Daniel Norton has placed Niccolò, Alessio and the parents in front of the camera in his studio in Manhattan. From “Cake Boss”, the experience has gone on to the place that is reputed to serve New York’s best pizza, then to the Disney store on Times Square.

The family has not been able to take professional family pictures, and Miss Skoom decided to do something about it.

– I think it’s important that they have proper pictures before Niccolò dies. Because that’s the reality, she says.

Norton is donating his talent for free to make sure the family gets eternal memories.

– You can think of pictures as something simple, because you as a photographer are doing it everyday, but in this case they have not had the opportunity to take pictures of the family. Then this is the least I can contribute with, he says.

The next day we meet at NikeTown, before moving on to the official Yankee’s Clubhouse to get hats and shirts with the family’s name on them, ending the day off with dinner at BLT Steak steakhouse in the evening. All according to the 12-year-old’s wishes.

In the Nike flagship store, Niccolò and his brother receive sponsored shoes. Many of the children with Progeria have hip dysplasia, which can easily dislocate their hip by the smallest mis-step – as Niccolò has experienced.

Therefore, he must have custom orthopedic shoes made especially for him, with one sole built higher. The red Nike Air shoes he wears are worn, because customizing shoes is expensive, and the parents can only afford one pair a year.

To the store, Miss Skoom has also invited graffiti artist André Trenier (39) from the Bronx. The brothers can choose freely what they want him to paint on their new shoes – a project the Norwegian woman is currently working to get to other children with Progeria.

– I want lego blocks. And my name, says little brother Alessio.

– Are you sure you don’t want any superheroes too, asks Trenier.

DESIGNEDE SKO: Niccolò fikk selv velge hvilke motiv som skulle males på de nye skoene sine. Foto: THOMAS NILSSON, VG.
CUSTOMIZED SHOES: Niccolò got to choose, himself, what design he wanted painted on his new shoes. Photo: THOMAS NILSSON, VG.

– Captain America, says the nine-year-old, and ligths up.

Niccolò is in no doubt what to choose: Mad Hatter and the cat from the “Alice in Wonderland” movie he likes so well.

– I think what she does for Niccolò is amazing. When I saw the e-mail, I immediately thought that I would say yes. The fact that I can contribute is just an honor to me, Trenier said.

WANTS TO ASK THE ROYAL FAMILY

This month, the annual Progeria reunion was hosted in Belgium, where Miss Skoom also participated. This year, there were two new faces: Siblings Batoul (8) and Yazen (4), who have fled from Syria with their family – and both have Progeria. As of today, only four families around the world have two children with this disease.

– In Syria, they have no knowledge of Progeria, and therefore the children have never been diagnosed, they said. People have stared and made fun of them, which has also made them very shy and confined, says Miss Skoom.

BROTHERS: Niccolò (12) and Alessio (9) got to choose new shoes at NikeTown in New York. Photo: THOMAS NILSSON, VG.

While two new ones arrived, one chair was empty. 12-year-old Cira Sophie from Germany died in May.

At each reunion they set up pictures and light candles for children who have passed since the previous gathering.

During this year’s reunion, the 37-year-old announced that next fall, 2017, everyone will be gathered in Oslo – and that she takes responsibility for the fundraising. In the past, it has been the responsibility of the families to fundraise – around $120.000 dollars for travel expenses and one-week accommodation for all families.

– This is a week when the kids forget that they are different, that they are in pain, and that in this world not everyone understands that on the inside they are just like everyone else. It’s also a week where parents can share experiences, pleasures and sorrows, said Miss Skoom.

Now, the job starts to get sponsors, and she says she hopes that kind souls out there will contribute. She also plans to make a charity single to fundraise for future gatherings, and will also contact the Royal Castle in hopes of getting the royal family to meet the children.

– HE IS IN A POSITION TO UNDERSTAND

– She has a big heart, says Niccolò’s mother Oriana about her Norwegian helper.

– No one asks her, but she does all this anyway. We are having an absolutely amazing time here, and spend no money. She pays for everything.

What do you think about it?

– I feel guilty and will owe a debt to her for the rest of my life. I know she doesn’t want us to think about it, but we do, because it’s a big expense.

They travel to Boston every two years for Niccolò to get treatment. An Italian organization pays the airline tickets, while the American Progeria Research Foundation provides food and lodging.

At the Children’s Hospital, Progeria children receive a medicine developed for cancer. It makes the blood vessels more flexible, which is necessary – as by the age of ten they have blood vessels like an 80-year-old.

– We know the future will come no matter what, and live from day to day, says Oriana.

– We do not know what’s going to happen tomorrow. Not what can happen this afternoon, either. We just have to live right in this moment, she says, and gets tears in her eyes.

TATOVERING: Niccolò har tatovert et hjerte på armen til Miss Skoom. Foto: THOMAS NILSSON, VG.
TATTOO: Niccolò has tattooed a heart on Miss Skoom's arm. Photo: THOMAS NILSSON, VG.

– How much does Niccolò know?

– He knows quite a lot, but we have never talked about life expectancy or things like that. He is so big now, that he can go online and search and read. He is able to understand.

For the family, the days in New York have been filled to the brink of experiences and impressions. The mother says that the sons have been thrilled with joy.

– I know that they will remember this for the rest of their lives.

FUN FUN FUN!
YEARLY REUNIONS
WITH THE HELP OF KIND DONATIONS

Now you can get an insight to the European reunions for the Progeria children. In this video you can get to know a few of the kids better.

Click play-button to watch video!

YOU CAN MAKE A WISH COME TRUE!

With your contribution, children living with Progeria have a chance to fulfil their biggest wishes in life. Every little helps. Thank you!