In a quiet, wooded area of residential buildings just off Rock Creek Park in northwest Washington D.C., about 70 people gathered in early October at the residence of the Tunisian Ambassador to the United States to celebrate the work of Manel Gharbi. Gharbi lost her daughter Maram at the age of three to a rare form of cancer in 2014. But since then, Gharbi has helped save the lives of many other children with cancer through the Maram Association, named after her daughter.
“I know that a door closed when my daughter passed away. But God opened my eyes to see my real mission on this planet and opened other doors to save many lives…and make the voices of Tunisian children with cancer heard around the world,” Gharbi said in her speech to those gathered at the official residence on October 2.
“I invite you to be those open doors of hope”
Gharbi paused only once during her speech, and only briefly, to hold back tears and steady her voice before continuing.
Although Gharbi has accomplished much in her fight over the last nine years, bringing to Tunisia specialized medical equipment as well as providing badly needed resources and support for cancer patients and their families, she is not done yet. The event in D.C. was the first launch of her next fundraising goal: to build Tunisia’s first pediatric oncology center dedicated entirely treating types of cancers that are not related to blood (in contrast, blood cancers like leukemia have good resources for treatment already in Tunisia, according to Gharbi).
“I invite you to be those open doors of hope,” she said to the guests, some of whom were in tears after hearing the story of Gharbi and her daughter for the first time. “Help me build this center. Please.”
Donations to the new center can be made at tunisia-aid.org/campaign/be-bold-campaign-help-build-the-first-pediatric-oncology-center-in-tunisia/.
A SHATTERING DIAGNOSIS
When Maram was two years old, Gharbi took her daughter to the beach, but she complained about pain on her toes from the sand. Maram started to get occasional fevers and couldn’t walk sometimes. As Gharbi recounted to a journalist years later, they took Maram from doctor to doctor, some of whom concluded she wasn’t sick at all. One doctor finally prescribed surgery, an unnecessary one, but that’s when they discovered Maram suffered from the rare cancer neuroblastoma.
“Manel…has been fighting for all the kids with cancer in Tunisia. It takes an extraordinary strength to turn grief into a life mission and purpose”
Maram began treatments immediately for the fast-developing cancer. Although she was in the hands of doctors at a public hospital who worked tirelessly to help her—Gharbi says she still works with those doctors, is grateful for them and that they are the “pride” of Tunisia—Maram eventually needed a stem cell transplant, a procedure that was not available at the time in Tunisia. They had to raise about 800,000 dinars within one month to get the procedure in Paris. That’s when Gharbi founded the Maram Association in January 2014 to raise the funds. But when Maram passed away in Paris in October later that year, Gharbi decided to keep going with the foundation.
In 2018, Maram Association purchased and brought to Tunisia’s National Bone Marrow Transplant Center a machine that could do the procedure Maram had needed. To date, Gharbi says 35 children have had the procedure in Tunisia thanks to the association’s work. Meanwhile, the association has hosted families without means and those from out of town who use the place as a shelter and resource while their children receive treatment in the capital.
“Manel has been fighting diligently for decades, first for her own daughter Maram, and then since her angel’s passing—may she rest in peace—she has been fighting for all the kids with cancer in Tunisia. It takes an extraordinary strength to turn grief into a life mission and purpose,” Tunisia’s Ambassador to the U.S. Hanene Tajouri Bessassi told the crowd gathered at the residence.
It was also the only time Bessassi has hosted an event at the official residence to support a foundation.
“I didn’t hesitate at all because it’s a very special cause…a very noble cause,” Tajouri Bessassi told Meshkal on the sidelines of the event.
RUNNING FOR MARAM
In December 2019, Manel Gharbi’s friends sent her photos on social media of a young woman wearing a “Run for Maram” T-shirt at a charity run in Memphis, Tennessee.
“People sent me her photo and told me this is a Tunisian who ran today for your daughter,” Gharbi told Meshkal.
That Tunisian was Saoussan Mahjoub, who at the time was working with St. Jude Children’s Research Hospital, a non-profit hospital that treats children for cancer for free. St. Jude has as part of its mission to help others around the world, sharing its scientific research for free and sometimes partnering with foundations through its ALSAC foundation to offer training and support to associations like Maram Association.
“You know I lost two children. This is why I feel for you. You are not alone. There are several women in here. It never goes away but I want you to know that you’re not alone”
Mahjoub, had been following Gharbi’s work through news and social media report and noticed she stood out in terms of the work needed in the field in Tunisia.
“There is this woman that keeps fighting the fight but no one talks about her at the international level because she’s in Tunisia. Nobody knows about our little country. So I said: ‘Maybe I won’t change the world, but I want my Memphis people and my St. Jude people to know there is something happening there.’ I said: ‘I’m going to run for her.’” Mahjoub told Meshkal.
A month later in January, 2020, Mahjoub visited Tunisia and met with Gharbi to give her the T-shirt she had worn when running for charity. According to Gharbi, Mahjoub promised that she would try to help St. Jude partner with Maram Association. In January of this year, that partnership was launched, and Gharbi’s trip to D.C. came after a training visit to Memphis as part of the partnership.
“The ALSAC Global alliance is basically a global support system for foundations like Association Maram in fundraising, training, development, all sorts of schools that she needs to run her foundations, management skills, donor-relation skills,” explained Mahjoub, who no longer works with St. Jude but is no volunteering her time to try and support Maram Association’s work in Tunisia.
PUBLIC-NGO PARTNERSHIP
Gharbi had “exclusive” news she broke to the gathered crowd in D.C.: that their years-long effort to get approval for Tunisia’s first children’s oncology center had finally succeeded. It will be on a plot of land at the Abderrahmen Mami Hospital in Ariana gifted to Maram Association by the Ministry of Health. The plan is for Maram Association to raise funds, build the center, and then give it back to the hospital as a resource.
“The rate of children with oncological pathologies is increasing and our hospitals are at capacity. We’ve got to build a center where they can get the highest level of care, all in one place. Science and technology move really fast and we’ve got to have the infrastructure to keep up and accommodate the children whose lives depend on these innovations,” explained Mahjoub.
As for the center, Gharbi explained they already have scale models, 3D imaging for the architecture and building ready. All they need is to raise $4 million dollars to fund the project. But to help the project, Tunisia Aid, a U.S.-based charity (registered as a 501(C)(3) institution) which facilitates payment from abroad to Tunisia for charitable projects, has agreed to host the funding platform for the center, available at https://tunisia-aid.org/campaign/be-bold-campaign-help-build-the-first-pediatric-oncology-center-in-tunisia/.
Perhaps as important as building the center for the children is to build it for the doctors, many of whom are leaving Tunisia due to a lack of resources and difficult working conditions.
“This center will help increase the number of bone marrow transplants, reduce treatment abandonment rates, raise survival rates, and encourage Tunisian doctors to specialize in pediatric oncology services and stay in Tunisia,” Gharbi said in her speech to those gathered, some of whom she hoped might donate to the project.
The center will alleviate many desperate issues around the treatment of childhood cancer, according to Mahjoub, including the need for doctors.
“For pediatric oncology we barely have a few rooms in the children’s hospital, but not enough. And what’s also happening is that we’re losing doctors because of lack of infrastructure, lack of means, and lack of opportunities. So our dream for the new pediatric oncology center is to also keep the doctors in, give them hope, say we’re trying to build something up to the global standards and that you would want to work there so don’t leave until then,” she said.
“YOU ARE NOT ALONE”
But despite the work she has ahead of her, dedicating her life to bringing up the memory of her daughter has taken its toll on Gharbi.
“It’s difficult to play the double role of being the cofounder of Maram association and the bereaved mother of a child. It’s a mountain of pain to bring back to life each time feelings that I thought were buried. To remember losing a child is difficult,” she said.
In the official Tunisian residence, the classical Tunisian architecture and handicrafts are a surprising reminder of the Mediterranean in an otherwise unassuming neighborhood of the U.S. capital. Seated on the ornate, floral patterned couches of the residence, Gharbi spoke with Meshkal as guests dined on couscous prepared by a new chef that had just arrived from Tunis to take up his new post. As Gharbi sat and spoke, a woman interrupted Gharbi by leaning over and embracing her.
“You know I lost two children. This is why I feel for you. You are not alone. There are several women in here. It never goes away but I want you to know that you’re not alone,” the woman said to Gharbi, not relaxing her hug.
“You too, you’re not alone. Be strong,” Gharbi replied.
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TO DONATE TO MARAM ASSOCIATION’S CHILDREN’S CANCER CENTER, USE THIS LINK:
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