In this Community Spotlight, Victoria Colone delves into the complexities of early diagnosis and treatment as a mom navigating the world of healthcare for her child with SMA.
Victoria Colone was 22 weeks pregnant when she learned through an amniocentesis test that her son, Jaxon, had SMA Type I. Despite her OB/GYN and genetic counselor having a general knowledge of the disease, it wasn’t until a neurologist invited Victoria to attend a seminar that she learned of Cure SMA.
“Cure SMA makes you feel like you are part of a family … As far as I know, no other organizations are this focused on the community, the people, the families they are serving,” Victoria said.
While Victoria and her husband couldn’t address issues of insurance until Jaxon was born, she was able to do independent research and talk with her doctors about treatment and care options available to her family.
At 4-days-old, Jaxon began receiving treatment through Biogen’s scholarship program and is now developing as a ‘normal’ ten-month-old alongside his peers.
“I want people to know we are thankful for them in helping pave the way to make this possible for our Jaxon … I would also like them to know the miracles that early diagnosis and treatment can provide,” Victoria said.
While attending the 2018 Annual SMA Conference, Victoria and Jaxon were able to make connections with those who have paved the way and with those who’ve had a similar journey. Although she became Facebook friends with many SMA families well in advance of conference, Victoria says it was amazing to meet them in-person.
“When we got back from conference, I had that ‘homesick’ feeling. I wanted to go back and stay forever. And what’s even greater is that in talking with other families after being home, we all felt the same way,” Victoria said.
That sense of home is something Victoria is especially thankful for and hopes to pass along to other newly diagnosed families.
“To be a part of the Cure SMA community means that no matter what you are going through, there is always someone who understands. Someone is always there, no matter what”, Victoria said.
Throughout August, Victoria plans to advocate on the importance of early diagnosis, share ‘SMA Facts’ with her social media community, and encourage others to share their stories of how they relate to SMA.
“SMA Awareness Month is a month that is all about supporting each other, giving back, and of course, raising awareness,” said Victoria.
Cure SMA is an irreplaceable resource for families impacted by SMA. We’ll do everything we can to improve quality of life for children and families affected by the disease and won’t stop working toward a cure.
Donate today and transform tomorrow by helping Cure SMA provide more resources and funding for early diagnosis, treatment and care!