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New hope for 11-year-old cancer patient

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Generous: Kevina Santucci, who is also battling cancer

An 11-year-old Bermudian who is terminally ill with cancer has been given new hope.

Neehari Robinson moved closer to raising the £20,000 necessary for the alternative treatment his parents, Otis and Shakira, believe can help him to recover.

The money was donated by his cousin, Kevina Santucci. She is also battling cancer and is being treated at Boston’s Massachusetts General Hospital.

Residents raised $17,000 to help the 28-year-old at a concert organised by the Southampton Seventh-day Adventist group, The Willing Workers.

“When I learned that my cousin had cancer of the same category as me I felt moved to help in any way I could,” Ms Santucci said. “[I] pleaded [on Facebook] with my friends and family to help fund him by any means possible. It was when I saw the poster for the benefit concert being held for me that I felt impressed by God to give half of what was collected to Neehari.

“I’ve never met him but I love him, as I do all my family.”

Ms Santucci has spindle cell rhabdomyosarcoma; her cousin has alveolar rhabdomyosarcoma. Both are rare and aggressive forms of cancer.

UK doctors last August gave Neehari six months to live without additional care.

The treatment he is receiving at the moment is not seen as a long-term cure. Their hope is to take him to Spain for alternative therapy, although there is a £20,000 price tag attached.

“I was shocked that they would be so generous, but by the same token not surprised because that is the type of person that Kevina is,” said Mr Robinson. “[Her father Kevin] Santucci is my uncle and he has always been a good uncle; one who looks after not only his family but the community at large. The money will go towards the £20,000 goal that we set for alternative treatment.

“When you no longer have the option of doing conventional treatment, any alternative treatment that you wish to pursue comes out of your own pocket and can get very expensive.”

About three per cent of all childhood cancers are rhabdomyosarcoma. Very few adults are known to develop Ms Santucci’s form of the disease.

Mr Santucci said doctors have not ruled out a genetic link between the two cases.

“The only way they can be sure is to be able to test Neehari, which it is impossible with him living in London,” he said.

Neehari had an emotional phone conversation with Ms Santucci last week, his father said.

“He cried, not only knowing that she was going to donate half of the money to him, but also that he is not alone in battling this disease,” said Mr Robinson. “He has his ups and downs. He’s not doing terribly well at the moment, but he is not giving up and neither are we. I ask the Island to pray for him and Kevina.”

Ms Santucci said: “He’s only 11 and deserves the best treatment. I have faith that we will both live through this. Our testimony isn’t just for us. I will live to see my daughter Karis, who is three, go to college.”

Mr Santucci said he was very proud of his daughter.

“She has such a love to help others. It made me think our cup is never so empty that we can’t share with others.”

Mr Santucci told people who attended a benefit concert in aid of his daughter that he planned to donate half of the funds raised to Neehari, and received permission to do so.

“I went to the concert and cried all night,” he said. “It was very well attended. People came intending to give. I must thank all of the public for how they are so willing to help a child of the soil. I ask the Lord to bless them.”

He said his daughter’s medical costs were close to $1 million. Much of it has been covered by insurance but there is a gap when her insurance will time out for a period.

“That doesn’t bother me any,” Mr Santucci said. “We are doing all we can. It has been an interesting road. Every day, there is a new chapter or a new development. Kevina has had many setbacks. That has made it quite difficult for her to move on at the rate doctors thought she would move on.

“We are just thankful. Each day we have with her is a blessing.”

• A special medical fund has been set up for Ms Santucci at Butterfield Bank. The account number is 0601562020013.

• Donations can be made to Neehari through gofundme.com/kjpszg or through the HSBC Bermuda account number 006-033-005-011.

The Santucci family: (From left) Kevina, Kevin, Karon and Jonathan
Neehari Robinson, Kevina's cousin