This is a story about a little girl that might break your heart. Or it might cause you to be grateful that, with help from many in this community and others, she now has a fighting chance.
Eleven-year-old Natalie Cohen was horseback riding in January when she complained that her chest hurt. It was soon clear why. A tumor was filling her chest and pressing on her airway. She was suffering from a chordoma, a rare cancer that occurs along the spinal column.
Doctors performed surgery that helped Natalie breathe better and relieved her pain, but said it was the most they could do.
Her stricken parents, Shirley Lowe and Jonny Cohen, did the only thing they knew how to do.
“We didn’t have any money, but we have the skills to network,” Shirley explained.
They contacted everyone they knew for help. They set up a web site. They investigated treatments and facilities. After rejecting Johns Hopkins and a German hospital, they homed in on Massachusetts General Hospital and Dr. Francis Hornicek, with whom they began an exchange of emails.
Shirley and Jonny were divorced years ago, but they have a friendly relationship, and they and their families and friends worked as a team to save their child’s life.
“Natalie’s dad was brilliant,” said Shirley. “He basically scoured the planet to find people who knew about our case.”
They decided that Dr. Hornicek’s plan of two operations, each more than 10 hours long, and MGH’s proton beam therapy facility were what Natalie needed.
But there was one problem—money. Lowe and Cohen are not poor. They were employed, they owned property. But they weren’t wealthy. And although they had health insurance, it wouldn’t work.
Natalie’s family is South African, and they live in Capetown. The care at MGH would be expensive, and their insurance wouldn’t transfer to America. Moreover, the cost of transportation to Boston and the incidental expenses they would incur would be another break-the-bank problem. Furthermore, Shirley would have to quit her job to accompany Natalie.
But their network kicked in. “My oldest sister’s best friend has a sister-in-law in Wellesley,” said Shirley. The sister-in-law, Ann Steele, invited Natalie’s family to stay with them. On March 17 they moved in while Natalie began tests and planning at MGH. And the Steeles went to work to raise money for Natalie.
“We had a big fundraiser at our house where we raised about $8,000 and another fundraiser raised about the same amount,” said Ann.
Then Ann, who is a member of St. Andrews Episcopal Church in Wellesley, reached out for help to other Episcopal churches. That’s when Mary and John Gier, members of Trinity who live on Phillips Street on Beacon Hill, got involved.
They had an unoccupied apartment in their house, and were first approached to rent it to Shirley so she could be close to MGH while Natalie underwent her surgeries. When the Giers heard about Natalie’s plight, they drastically discounted the cost of the apartment. Mary herself has been on a tear to raise money.
Deb and John Hornig, who works on Beacon Hill at the Appalachian Mountain Club, also began to help. They had met Shirley in 2004 on a trip to Capetown. She was a friend of a friend of theirs. Deb comes into Boston from Nahant about every other day, taking home laundry and giving Shirley a break from time to time. “She has become like a sister to me,” said Shirley.
Shirley said MGH has been wonderful. The doctors donated their services, and MGH deeply discounted the cost of the hospitalization to about $250,000, of which Shirley said they’ve raised all but $90,000. Dr. Britain Nicholson, the chief medical officer at MGH, said he couldn’t talk specifically about a patient, but he could say that MGH has policies about providing free care, and in such cases will often ask families to pay a percentage of the cost.
Shirley sold her house in Capetown, and she and Natalie have been living on those proceeds. Friends donated air miles for the family’s flights and for Natalie’s friend Ella to make the trek over to cheer Natalie up. Shirley and Jonny’s network has gotten them most of the equipment and the nutritional solution Natalie needs since she still has trouble with regular food.
Here’s how things stand now. Natalie has been discharged from the hospital, but is receiving proton and other therapies. She and Shirley are living in a studio apartment at Christopher’s Haven, a facility for children undergoing cancer treatments in the West End behind Mass General. Jonny has been back and forth a few times between Capetown and Boston. But after all, someone in the family has to keep working.
Natalie gains strength and then has setbacks, but Shirley and Jonny are hoping she can be back home in South Africa by September 13, which is her brother’s birthday. Natalie’s parents are hopeful for a long life for Natalie, since a good number of patients who have had surgery as well as proton beam therapy have been cancer-free for years.
Shirley recognizes the contradiction of sorrow at her daughter’s situation and of gratitude and happiness at the way people from all over the world have stepped up to help the family.
You can go on Natalie’s website—nataliescircleoflove.org—to find out more about Natalie, see pictures of her, and follow her story. And if you wanted to donate to Natalie’s cause, I’m sure her parents wouldn’t mind.
lovely story, thank you. from the cape town friends x
Keep strong Natalie – you are such an inspiration.