Editor’s note: In 2021, Leslie Danford launched her business while pregnant with her fourth child. After failing his newborn hearing screening, the Danford infant was later diagnosed with Usher Syndrome Type 1B, a rare genetic condition that impairs hearing, balance and will likely lead to loss of vision in childhood. Although there is no cure for Usher syndrome, many promising therapeutic studies have emerged.
If there’s one thing I’ve learned about life at 40, it’s that you have no idea what’s to come. It could be something that will change your life forever.
In early 2020, I lost my dream job in the hospitality industry due to the global pandemic and felt like I had lost my identity. A few months later, I found out I was pregnant with my fourth child – right in the middle of setting up my newborn business, Vitaminis.
In this case, I had no idea what was next. My pregnancy was normal and my daughter was born healthy. We were even able to leave the hospital a day earlier so she could meet her three brothers at home who were delighted to see her!
An unexpected diagnosis
The only surprise was that she didn’t pass her newborn hearing test at the hospital, but since we had three hearing children and no family history of hearing loss, we didn’t think about that.
The nurse confidently told me that my daughter probably had fluid in her ears. I noticed that she was an excellent sleeper, not at all disturbed by the noise in our packed house, but I just considered myself lucky.
When we finally completed follow-up testing about two months later, we learned that our beautiful baby girl had severe to profound bilateral sensorineural hearing loss. In other words, she was deaf. My husband and I just couldn’t believe it.
The diagnosis was so unexpected, unrelated to our history or experience, that we couldn’t understand how it could be true. We ordered a second test, with the same results. As part of routine follow-up testing for hearing loss, we ran our daughter’s blood for additional genetic testing.
Of course, many people live full and happy lives with hearing loss, but our family has been in a period of grief. Our daughter would never hear the happy laughter in our house, the sounds of her brothers playing, or the voices of her parents.
Then we discovered cochlear implant technology, which provides access to sound via a medical implant. For a hearing family of five with a deaf child, this technology was a godsend. Our daughter could participate in the sonic world of our family life after all. We have also committed to learning sign language as a family, so that we have a way to communicate with our daughter in case she is without her cochlear implants.
After two months of processing the hearing loss diagnosis, we were finally comfortable with our new way of life. Our youngest would be embraced and included by our family, with all the tools and support she would need.
The worst thing that can happen to a deaf child
Then the genetic test results came in (after almost three months of treatment). There was an explanation for our daughter’s hearing loss: she had Usher syndrome, type 1B.
People with this condition are born with hearing loss and sometimes vestibular (balance) problems. Worse still, they will lose their vision over time, starting at the periphery and shrinking more and more, until there is nothing left, usually around age 10.
It turns out that my husband and I carried the autosomal recessive gene for this condition, which means there was a 1 in 4 chance that our offspring would have it. Here is our fourth child, with the syndrome.
If you had asked me what is the worst thing that can happen to a deaf child, I would have said that it took their sight away. We simply couldn’t imagine a world that was both silent and dark.
Would she have friends, would she grow up and start a family, would she be able to pursue any profession she desired? Just after coming out of the cycle of grieving and accepting the diagnosis of hearing loss, we were thrown back into it.
There was a time when my husband and I cried ourselves to sleep, then woke up and remembered, and cried again. We told our other children – aged 5, 6 and 8 at the time – but they were too young to really understand. The friends were nice, but they didn’t understand what we were going through.
see the light
Like many of us facing uncertainty, we scoured the internet. I read all about Usher Syndrome and looked up stories of people living with it.
I quickly discovered that NBC News’ Chief White House Correspondent, Peter Alexander, had a sister – Rebecca Alexander – who was not only alive but thriving, despite her condition.
His strength and positivity inspired me to hope, finally. I devoured his book and began to realize that having Usher Syndrome was not a death sentence. There were so many possibilities despite the challenges of the condition.
We found other families on the same path as ours. The Porcanos – whose daughter was also born with Usher Syndrome Type 1B – created Save Sight Now, a group that raises money for the search for a cure. We have also partnered with the Foundation Fighting Blindness.
We learned about the promising research underway to halt and even reverse vision loss and retinal degeneration associated with Ushers. There’s so much hope with technologies like CRISPR and gene editing, especially when you think about a ten-year horizon. We have started to see the light.
back to business
Throughout all of this, there was a worry at the back of my mind. Of course, my daughter’s health and our family’s plan to deal with her condition was the top priority, but what about Vitaminis?
The business was finally getting started, after all the hard work and investment I had put into getting it started. If I gave it up, all of that would be lost.
When I realized that my daughter would need intensive therapy to learn how to use her cochlear implants, treat her vestibular dysfunction and manage her vision loss, not to mention learning sign language, I started feel hopeless.
How could I possibly run my own business on top of all that? If I had to give time to this business, was I just being selfish when my daughter and my family needed me? I took my foot off the accelerator for a moment to think about it.
Eventually, we found therapists, a sign language teacher, and a Deaf culture mentor. We have started to build our support network and regular daycare. As our routines became more established, I could feel the constraints on my time loosening.
I thought through the scenarios: If I gave up Vitaminis, how would I feel years from now? If I could keep working on it, is it something I would regret?
I returned to one of the driving motivators that I relied on as a working mother throughout my career. Spending time on something outside of the family doesn’t mean you’re being selfish or taking anything away from them. It also means that you are a role model and an example of what hard work can do when investing in your future.
Given my daughter’s diagnosis, this has become all the more meaningful to me. I didn’t want her to see me giving up in the face of challenges. I wanted her to see that with the right support, plus hard work and persistence, she could pursue her dreams, even in the face of what might seem impossible. I decided that as long as my family’s needs were met, I would continue to grow my business.
I came to this realization nine months ago – and it’s amazing how far it’s come. Our family has a basic working knowledge of American Sign Language, and our daughter – now 15 months old – speaks a few signs.
Her cochlear implants are active, and she processes and responds to sound. We have raised funds to support critical research towards several promising steps in the mission to save the vision of this community.
At the same time, Vitaminis has just launched its second product, with more growth expected in 2023. While we have a tremendous journey ahead of us, I like to think that on tough days we focus on gratitude, progress we have made so far and the horizon ahead.
I want my daughter to know that no matter what challenges life throws at her, she can dream big, chase those dreams, and build her life with those she loves who cheer her on.
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