Lisa LoVasco, a local Macomb County mom, found hope and healing after her infant daughter Aria was diagnosed with a rare blinding disease. Now, their family has led the charge to raise awareness and funds for pediatric retinal research at Hope for Vision Walk, hosted by the Pediatric Retinal Research Foundation (PRRF).
The walk brought together researchers, doctors and families from around the world in a shared goal: to cure rare retinal diseases like FEVR and retinopathy or prematurity, while showcasing the healing power of coming together.
Can you share a little about your family and your daughter Aria’s diagnosis — how did you first learn something was wrong with her vision?
When our daughter Aria was only 2 months old, we noticed that she was occasionally having a rapid back-and-forth eye movement. We were concerned and pushed to see a pediatric ophthalmologist.
Once the doctor reviewed the photos taken in the office, he let us know that he was able to get us an appointment to see a pediatric retinal specialist, who was described as the best in the world.
The next day, we had our first visit with Dr. Michael Trese, who let us know that Aria had a retinal detachment. She received her official diagnosis of Familial Exudative Vitreoretinopathy (FEVR) the following week.
Aria is now 11 years old. We are a family of four, and she has a little brother named Gaetano, who does not have FEVR, and a dog named Rocco. Aria is in dance, plays the violin and has sung in the choir for the past two years at our church.
What was it like receiving news that your infant had a rare, blinding disease, and how did your family process those early days?
Receiving the news that Aria was born with a rare eye disease was both unexpected and overwhelming as first-time parents. We were scared because FEVR is considered a progressive disease, and can be dormant and become active at different stages throughout her life.
In most cases, the disease is genetic, so we were also fearful about having more children.
And lastly, we, of course, experienced great sadness. It was very hard to watch such a small baby have to go under anesthesia so frequently to be examined; it truly broke our hearts. So many friends around me were also having babies, healthy babies, and no one was going through what we were, so my heart ached for Aria.
It was a very lonely time in our lives, not having anyone who I felt understood what our family was going through was difficult.
How did you get connected with the Pediatric Retinal Research Foundation, and what kind of support did you find there?
You feel so powerless as a parent. You can’t fix this for your child, but I knew I wanted to support the people who can. I wanted to support the research they were doing to help those with rare retinal diseases. I realized that, as part of the rare disease community, if people like me aren’t getting involved and aren’t asking for financial support, who would?
I asked Aria’s main overseeing doctor, Dr. Capone, how I could get involved. He pointed me in the direction of what was, at the time, ROPARD. They have since reorganized into what is now the Pediatric Retinal Research Foundation (PRRF). I have since become involved with the Hope for Vision Walk, the annual Hope for Vision Conference and the Family Advisory Committee.
What does the Hope for Vision Walk mean to you personally, and what do you hope other families take away from this event?
The Hope for Vision Walk has become a celebration for our family. We bring colorful beads for Aria to pass out to team members, and usually spray the girls’ hair with our team colors and glitter. We have so much fun, and it has become a really fun event that we look forward to every year.
I hope other families experience that sense of community from joining the walk, and I hope it inspires others to get involved and support the organization.
How has Aria inspired you, and what are some of the ways she brings joy and hope into your family’s everyday life?
Anyone who knows Aria knows that she is pure joy. God blessed Aria with this enormous personality and confidence that anyone in the room can feel.
She has never let FEVR hold her back, and I know that as she matures and grows in her understanding of all she has been through, she will be able to share that experience with others. I believe she will inspire others to live their best life.
What advice would you give other parents who are just starting their journey with a rare disease diagnosis?
When you are ready, seek others in the rare retinal disease community, and the PRRF is a great resource for getting to know other families.
For me, it really became a part of my healing process as a mother. Not only did it connect me with other mothers who were in my shoes, but it also gave me something physical I could do to support Aria and the rare retinal disease community.
Through the PRRF, we have connected with a family in Florida that we have become great friends with. We planned a meeting for our girls the night before the Hope for Vision Conference.
As we waited to meet Aria’s now friend Mia and her family, she looked at me and said, “Mom, I feel like a dream is about to come true!” I was so happy to finally connect her with another girl who also had FEVR.
The girls clicked instantly, and we have kept them in touch ever since. They are coming in to join us in person at the walk for the first time, and we are so excited to have them with us in person!
We know not everyone can be in person for the walk, but it’s amazing that people are able to participate virtually and are able to get involved from anywhere in the world.
from Metro Parent https://ift.tt/Y0fjCEG
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