This little girl with spinal muscular atrophy is changing the world, and befriending the Holy Father in the process.
“Hi, I’m Noemi. I was born in 2012, embraced by the love of Mom and Dad. It was a joyful birth during which I transmitted the magic of life from the first moment. Apparently healthy, when I was 3 months old I started to have difficulties in my movements.”
This is how Andrea begins to tell the story of his daughter and their family, a story in which they have had to face obstacles, illness, and suffering. Still, it’s a beautiful story, full of life, faith and hope.
Noemi paints with the only arm she can move, and her drawings are full of heart and color—like her brightly painted nails—and enthusiasm and kindness. They seem to reflect the soul of the artist herself, from what I was able to discover through the stories told by her dad, which I have found in videos on YouTube.
Recently I contacted him on Facebook, and I was lucky enough to talk to him on the phone and listen to his testimony as a man who has been tried but is strong, who is tired but not giving up, and who is grateful despite it all.
At the age of three months, Noemi was diagnosed with spinal muscular atrophy type one (SMA1). They received the diagnosis on October 17, 2012, Andrea tells me, and he remembers that day perfectly. He says,
“The doctors gave her 3 months to live, and told us she’d make it to Easter at the most. It was a death sentence for us distressed parents. I turned to look at Noemi and she smiled … Noemi turned 8 years old on May 31. Science doesn’t have the last word about our life. Who decides about our life is not us—it’s the Lord. I’m healthy, and yet, I don’t know how long I’ll live.”
In the years since that diagnosis, his little daughter has changed his life and who he is as a person. He is grateful as he reflects on how much has changed for the better:
“I was a man like everyone else: work, car, home … I thought of the future, never the present. I had my plans to carry out in order to fulfill myself. My daughter opened my eyes. It’s as if she said to me, ‘Shall we do something big for others?’ because then it turns out, the others are us. I had everything, and I was a complainer; I lacked nothing, but I was sad, gloomy, melancholic.”
After the diagnosis, the Sciarretta family decided to go on a pilgrimage to Medjugorje. In the storms of life, they sought a safe haven, and they entrusted themselves to their Mother.
“In December, two months after discovering Noemi’s disease, we decided to go to the Gospa. We spent 10 intense days in Medjugorje, and it was there that we decided to start the Project Noemi non-profit organization.”
In April 2012, the association was founded with the aim of raising health workers’ awareness of SMA1, supporting scientific research, and providing financial aid to families who live with this disease, in the hope of improving, as much as possible, the quality of life for sufferers of this illness.
The pope’s telephone call and the invitation to Santa Marta
Andrea wrote a letter to Pope Francis in which he told the pontiff the lessons that Noemi had taught him with her fragile yet powerful life; how she had unmasked every pretension, every certainty. Then he told the pope about what they were going through at the time, the project for the non-profit organization, and much more. Andrea told me, “I sent it out knowing it was like putting my message in a glass bottle and throwing it in the ocean.”
To Andrea’s great surprise, the Holy Father telephoned Andrea and invited him and his whole family to Casa Santa Marta (where Pope Francis lives in the Vatican). “What a great gift,” thought Andrea and his wife. But that was only the beginning.
They met the Holy Father, who spent a long time with them. They even had the extraordinary experience of being able to go to confession with him. He then offered them housing for the night so that he could meet with them again and have lunch with them.
The family accepted, full of gratitude. They didn’t know that shortly afterwards, in St. Peter’s Square, Pope Francis would make the greatest and most surprising gesture, asking all those present to pray for Noemi.
Pope Francis asks everyone in St. Peter’s Square to pray for Noemi
“Allow me to ask you for an act of charity,” the Pope said. “Rest assured that we’re not going to take up a collection,” he joked, then said,
“Before coming to the square I went to visit a little one-and-a-half-year-old girl with a very serious illness. Her dad and her mother are praying and asking the Lord for the health of this beautiful little girl. Her name is Noemi … Let’s perform an act of love. We don’t know her, but she’s a baptized child; she’s one of us, a Christian. Let’s make an act of love for her. In silence, first let us ask the Lord to help her at this moment and give her health. We’ll keep silence for a moment, and then we’ll pray the Hail Mary.”
Andrea and his family were happily overwhelmed by what felt like an infinite sea of prayers. They received letters from all over the world, and expressions of friendship and affection, along with donations for Noemi’s association. It was an unexpected and beautiful tumult of love!
From that time on, their friendship with the pope continued. They saw him again in 2016, and on that occasion the Pontiff gave Noemi his papal zucchetto.
The battles won by Project Noemi
Meanwhile the work of the Sciarretta family continues through Project Noemi, and thanks to their commitment, tenacity, determination, and courage, they’ve managed to achieve a great deal in their region of Abruzzo (near Rome).
In 2014 they helped found the pediatric sub-intensive therapy department at the hospital of Pescara, and it has been in operation since 2018.
Since 2015, thanks to the exhausting work of the Association, the Abruzzo region provides specific funds to support family caregivers: 10,000 euros per year for an unemployed parent who is taking care of a child suffering from a rare disease or severe disability.
Recently, during the lockdown, Project Noemi managed to donate FFP2 masks through the Red Cross to over 100 families with disabled children, not only in Abruzzo but also in Northern Italy, in places particularly affected by the virus. “They thanked us, full of emotion. Our help made them feel visible,” Andrea said.
Their work has helped fill a void left by other institutions. Noemi’s family is a great example of how suffering can teach us compassion, and how compassion can lead to action to relieve the suffering of others. If we stop to think about it, everyone has needs of some sort; if we open our eyes and hearts, there are countless opportunities to reach out to share our gifts, abilities and resources—and to thank others for the many small but not insignificant ways they have reached out to us.
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