When their 2-month-old daughter’s seven new birthmarks were diagnosed as evidence of neurofibromatosis, Laura and Ted Wallof could not have fathomed the road they would travel.
But for the Redondo Beach couple whose now 5-year-old daughter Grace brings love and light to their world, the proud parents of an adorable kindergartener continue to take the brightness and pass it on.
Steps in that direction resulted in a walking team that raised more than $7,000 recently for research that will lead to a cure for NF, which could also produce a cure for cancer, according to medical professionals who say the DNA mutations that cause NF may yield crucial information about how cancer develops.
“The tidal wave of love and support was just overwhelming,” said Laura. “Honestly, if felt like a wedding! We had 70+ friends, family, neighbors, schoolmates and co-workers all come out to support us at CBS Studios.”
Team Super G, as they dubbed themselves, participated in the 10th annual Los Angeles NF Walk at CBS Studio Center to raise money and awareness in support of the Children’s Tumor Foundation, the only global non-governmental organization fighting NF, which causes tumors that can lead to cancer, blindness, hearing loss, learning disabilities and dysmorphia to grow anywhere in the body.
For Grace, NF1 (the other two types are NF2 and Schwannomatosis) means the Jefferson Elementary School student undergoes MRIs with sedation every three to six months to “closely follow the tumor growth on her hypothalamus and the two neurofibromas on her optic nerves, which could cause blindness,” said Laura.
So far, Grace’s development has been typical of a normal, non-NF five-year-old but her parents and team of 12 specialist doctors must stay on top of her health.
“We have to always be vigilant of normal growth and development,” said Laura, “because any delays could be related to tumor growth. All parents are delighted when their children meet developmental milestones, but for us, it’s a cause to rejoice. Somehow, NF has caused us to take nothing for granted. We celebrate the small, normal successes and it has caused us not to expect our child to be the best, but just to be.”
Grace’s health team at Children’s Hospital Los Angeles includes a neurologist, neuro-opthalmologist, speech pathologist and occupational therapist.
The Wallofs discovered the Children’s Tumor Foundation about a year and a half ago, and the discovery has been an important one for the family. Laura credits their neurologist, Dr. Tena Rosser, at Children’s Hospital LA for connecting them with the foundation.
“Dr. Rosser grounded this disease for us by educating us, supporting us and offering us a supportive tribe. I had been craving a community that I could connect with on, what felt like, a solitary journey through the world of neurofibromatosis.”
Laura notes that many people with NF are not as fortunate as they are and she is thankful for her daughter’s health.
“We are blessed that Grace has not had any surgeries related to her NF1,” notes Laura. “If her tumors did grow in size, she would likely undergo chemotherapy before any surgery. Surgery is a last resort as the tumors often grow back.
“Grace is radiant! She is always the happiest person in the room. She is playful, loving, empathetic and spunky. Despite having health issues, she is eternally joyful and has somehow made it a normal part of her life to know all about IVs and finger pulse oximeters. Grace can run and play and tumble with the best of them. She has stores of energy and will outlast most people.”
All forms of NF are autosomal dominant genetic disorders which can be inherited from a parent who has NF or may be the result of a new or spontaneous genetic mutation, according to the Children’s Tumor Foundation. In addition to causing tumors, NF can affect the development of non-nervous tissues such as bones and skin.
The Wallof family will continue to fight against NF and raise awareness to find a cure.
“I think, through this experience, we have discovered that every family has something that they struggle with, that torments them, that they didn’t ask for,” said Laura. “And there’s this level of humanity where we all can connect. It’s a vulnerable and somehow righteous place to be.”