The mum of two on life as a working mother, starting her own business, and her personal fight against pediatric cancer
In early 2016, you would be forgiven for thinking Gisela Niedzielski was a woman who had it all. In addition to her gorgeous twin girls Bianca and Stella, she was mere weeks away from launching a new shoe brand with her sister-in-law Alexia Niedzielski and Head Shoes Style Director at Louis Vuitton, Fabrizio Vitti, a passion project that took her out of the consulting world she had existed in for years, and into the often-hectic pace of a fashion business in its infancy.
Mere months later in November 2016, life as she knew it was no longer recognisable. After an unexpected epileptic episode at their home in London, three-year-old Bianca was taken to hospital to remove what was then considered to be a benign tumour on her brain, but which then turned her and her family’s life upside down. “We knew something was wrong when we saw Bianca’s neurosurgeon waiting for us with an entourage of staff including a social worker and a neuro-oncologist. He told us it was much worse than they expected and diagnosed her with an extremely rare grade IV brain cancer called ETMR”.
“We were told our options were to go home and make her comfortable for the two months she had left, or to radiate her whole brain and spine with devastating consequences and a dismal prognosis”. A diagnosis of this kind would be devastating to anyone, let alone to the family of a child who had not yet celebrated her fourth birthday. “When we arrived back home that afternoon, Bianca was playing with her sister – full of life and healthy in appearance. That day we did not have the strength to look her in the eyes. We were devastated beyond words”.
When speaking with Gisela, one gets the impression that we don’t truly know what we’re capable of until we’re faced with a new reality and are shaken violently, and without warning, from the life we believed to be true. A two-month diagnosis was one they refused.
Starting immediately, she and her husband Michael researched ETMR, its treatments, and its survivors. For every glimmer of optimism, they also found discouragement. They spoke to doctors who agreed with the course of action recommended in London, but at the same time a family friend found, and got in touch with, a survivor of ETMR who lives a normal, happy life in Mississippi. Other avenues they were told to explore lead nowhere. Like a lot of people living with disease, it could often feel like one step forwards and two steps back.
After four days of intense research and no sleep, the best hope they had was with a hospital in Boston. With no other plan except an appointment at the hospital, tickets were booked and the family was officially relocating to begin treatment. They were living in Boston within a week of the initial diagnosis.
In the 12 months since then, Gisela has been working three jobs: Mum to Bianca and Stella, managing Bianca’s treatment plan (including a move back to London and fortnightly trips to Boston for doctor visits), and launching the Fabrizio Vitti brand (largely from her daughter’s bedside in Hospital). “Fabrizio is a happy and joyful brand so in many ways, thinking about shoes and business instead of chemotherapy has helped me regain my strength and carry on. I was able to count on my team members – especially Victoria Tudella – and be able to work at strange hours of the day and night to balance my schedule. Although I do sometimes think that all that’s going on in my life is hanging by a thread”.
Another source of inspiration and strength has come from Bianca herself – “children are incredibly resilient. They don’t dwell on difficulties or feel sorry for themselves and this has been a great lesson for us”. They celebrate milestones and make life as happy as they can for Bianca – “on the last day of radiation her cousins flew over from Brazil and threw her a surprise party. We were all so proud and she took a picture, that I still look at today, that said ‘it was tough, but I am tougher’”.
You don’t have to look far to see where that toughness has come from. Mothers around the world face the heady mix of emotions that come with deciding whether or not to return to work. And for women in Gisela’s position, we are reminded, once again, of the unmatched strength of a mother. Carrying on with her Fabrizio Viti journey during her personal turmoil was not an easy choice but being able to distract herself with business and not sink too deeply into despair allowed her to be strong for her family and especially Bianca.
One aspect of the pediatric oncology world that has been hard to swallow, is the inexplicable lack of funding and research into rare cancers. Given their rare nature, they are considered not “financially justifiable” and are thus largely forgotten by the pharmaceutical industry, receiving only 4% of government oncology grants. In the past 20 years only three drugs have been approved that were specifically developed to treat children.
That statistic was not one that Gisela and Michael could live with so, in addition to their already overwhelming responsibilities, they established a fund that would breathe life to important research for forgotten patients. Dedicating at least one day each a week, and countless weekend hours, they have raised over a million dollars (just over half of their end of 2018 goal) with the purpose of funding research that looks at the rarest childhood cancers.
The Niedzielski family have just celebrated Stella and Bianca’s fifth birthdays, the girls will start reception in September in London, and Gisela and Michael continue their fight to make families with fights like theirs ever more visible. In addition to the financial goals, the fund hopes to raise awareness about rare cancers that affect our children. “Pediatric research is so underfunded, the numbers are alarming. The more people know, the more we can make a difference”.
In January 2019, The Bibi Fund will hold a gala to raise funds for, and awareness of, pediatric cancers. Their website can be found here where more information and an opportunity to donate is available. We encourage you to share this story to help raise awareness of ETMR and other rare pediatric cancers.
Words by Hannah Finnigan-Walsh
Photographs by Eva K. Salvi