Becoming a mother often empowers us to do things we didn't even think we were capable of. Moms break down barriers and overcome challenges and obstacles for their kids every day, and Nasha Fitter is an exceptional example of this. Nasha's daughter was diagnosed with a rare genetic disorder, FOXG1 syndrome, when she was 7 months old.
At the time of her daughter’s diagnosis, Nasha was the CEO of her tech startup, Schoolie, a platform on school performance. Rather than letting herself feel defeated by her daughter's diagnosis, Nasha quit her job to find a cure and, along with several other mothers, started her own research foundation to find a cure for FOXG1. FOXG1 is a neurodevelopmental condition that affects movement, speech, and cognitive development.
CafeMom had the privilege of reaching out to ask Nasha some questions about her inspiring story and journey. As a woman, mother of three, company founder, VP, and wife, Nasha’s determination and innovation in the face of her daughter’s life-changing diagnosis gives new meaning to the power of a mother’s love.
Nasha described her daughter’s diagnosis as 'shattering.'
“The period after Amara’s diagnosis was one of the worst in my life," Nasha tells CafeMom. "It truly shattered me. The words that stood out to me were ‘lack of speech, movement and severe intellectual delay.’ I’ll never, ever forget reading those words."
Nasha explained that her daughter Amara missed the majority of her 6-month milestones and that they were told to check back in at 9 months, but Amara began having seizures, called infantile spasm, when she was around 7 months old. “At that point, it was clear the missed milestones were due to an underlying cause," Nasha said.
“Amara having seizures was both a blessing and a curse. If she had not had seizures, we may have been on a long diagnostic journey. Because of her seizures (and the severity of them), she was sent to a pediatric neurologist who immediately ordered a slew of genetic tests. Amara’s FOXG1 syndrome diagnosis came through Invitae’s epilepsy panel," Nasha explained.
Doctors told her there were no treatment options, so she took matters into her own hands.
When asked if doctors gave them any next steps once Amara was diagnosed with FOXG1, Nasha tells CafeMom, “We were told there were no treatment options and by the time one was developed — if that even happened — Amara would be too old to benefit. It was crushing."
"Our doctors helped with getting physical therapy, occupational therapy, and speech therapy approvals for us. But otherwise, we were really on our own.”
Despite doctors not offering any hope at the time of Amara’s diagnosis, Nasha was determined to fight for a cure and not accept what the doctors had told them. A big part of this was connecting with other FOXG1 mothers and parents. “The shining light in all of this has been the power of community," Nasha says.
She explains that after they received Amara’s diagnosis, she started asking questions about what seizure medications worked best, which vitamins to take, the best chairs to purchase, and these connections helped her to find like-minded parents through social media, which led to Nasha and two other mothers meeting via Skype and creating the FOXG1 Research Foundation in 2018, now a global nonprofit working to find a cure.
Nasha also joined a startup called Ciitizen, building a rare disease platform that collects clinical data to help in drug development. Additionally, she serves as the VP of Patient Data Network Strategy and Partnerships for Invitae, collecting data on rare disease patients to inform potential cures.
'I don't have time to be scared or feel sorry for myself.'
Nasha clearly threw herself into the work of not just helping her own child, but children of others as well. We are amazed at how Nasha has handled her company, being part of a startup, and serving as a VP while parenting a child with a rare disease, along with her other children.
When asked if it was a challenge to run these companies while being a mother, Nasha tells CafeMom, “Yes! I am definitely over-extended! But I just try to do my best. I feel grateful for the opportunity to do such meaningful work with brilliant and mission-driven people. Being a good mother is also very important to me and I feel blessed to have a wonderful husband and three amazing children, along with great friends and extended family.”
She explains that like most working moms, she is trying to balance everything and do her best and keep showing up. “I try to do my best to balance my energy and time to focus on work and the people I love. Like most working moms, there are days where I feel like a failure and that I am letting everyone down. But I just wake up the next morning, show up, and do my best,” Nasha said.
Nasha also shared how being a mother has empowered her to do things she might not have done before. “I don’t think I would be this passionate to find a cure if I was the one affected by this disease, for example. It is because it is my daughter, my child, that I cannot rest until I know I have done all that I can. I don’t have time to be scared, or feel sorry for myself, because this precious human being is counting on me. That fills me with intense empowerment," she shares.
'The hour after dinner is my favorite.'
As any parent knows, the post-school, post-work portion of the day with kids is often referred to as the second shift, and for good reason. There’s cooking, cleaning, trying to get everyone to sit and eat, and usually bath time and homework, and then some more to-dos to check off the list before you and your kids get to sleep. Despite how chaotic the second portion of the day can be, Nasha says, “The hour after dinner is my favorite.”
Like most parents, from the moment the day starts until it ends, Nasha's days with her daughter and her family are full and we are in awe of how she manages everything.
Nasha shares that Amara attends a special needs program at their local public school, and that they have to have her at the bus stop by 7:20 a.m., then get their other two children to school by 7:45 a.m. “So, mornings are chaotic."
After school several days a week, Amara has ABA, a type of therapy often used to help children with autism. Nasha shares they have a caregiver who helps them with Amara while she and her husband juggle work and chauffeuring their other two children to their various activities.
“By 6:30 p.m., we are all home and most nights have dinner together," Nasha says. She explains that it can sometimes be a challenge for Amara though. “Dinner with Amara ranges from messy to absolutely excruciating (screaming, crying, biting herself, etc.).”
“If Amara is not having a meltdown, I really enjoy having all three kids around, and just playing with them. We have dance parties (Amara loves 50s music), playing cards (Amara flicks the cards), reading, and cuddling — Amara is cuddler No. 1," Nasha shares.
Nasha wants to urge people to be more accepting.
“I wish people in general were more accepting of children who are different. All parents of special needs children struggle in public. Amara can have massive tantrums, scream in restaurants, bite herself or just make a lot of noises. Often children with autism have similar traits. Many children are in wheelchairs and have feeding tubes. It gets hard when our kids get stared at in public, when it is obvious folks are annoyed by the noises," Nasha says.
“Our society continues to be unhelpfully independent and obsessed with ‘normality.’ I wish there was an understanding that societies succeed when there is interdependence, that communities and compassion supply us with the richness of life. Special needs children teach us so much! I have learned how to be patient and loving in a way I didn’t know possible," Nasha tells CafeMom.
Nasha Fitter
'You will survive, and you will even thrive.'
As rewarding as it is, parenting and being a mother is a hard job, and adding anything more to that can easily feel overwhelming, but Nasha wants to encourage other parents of children diagnosed with rare diseases.
“It is not as awful as you think right now. You will survive, and you will even thrive. A rare disease child will change your family for the better. You will all become more compassionate," she says.
Nasha shares that the rare disease community is powerful, and that making life better for your child and other children fills you with a purpose many wait their entire lives to experience.
“If you have other children, they will grow up to become unbelievable humans. The rare disease community is powerful and you now have that entire community as your support. You also have the chance to get involved to make life better, not only for your own child, but for countless others. That will fill you with a purpose that many wait their entire lives to experience. And call me if you need," Nasha says.
If she could go back in time, Nasha says, ‘I would say give myself some grace.'
Wisdom, time, and perspective are everything when you are looking back at your younger self, especially as a mother. But the heavy experiences we go through as parents and individuals often shape us for the better.
“I would say, give myself some grace. That I can let go of the anxiety and fear. Everything is going to work out. Even if a cure can’t be found by XYZ age, it’s going to be OK. Look within my daughter’s eyes. Enjoy that. No one knows how long any of us will be on this planet. While I am alive, and while I have her in my arms, stay present and enjoy it. And above all, just give myself some grace,” Nasha says, looking back at how she handled life in the early days of Amara's diagnosis.
Her love for her daughter and family, and determination to not let a diagnosis overshadow their lives is so beautiful and inspiring, and we are grateful for an empowering example of how powerful a mother's love can be.