Mark Dunning founded the Usher Syndrome Coalition shortly after his daughter was diagnosed with the disease. He lives on Cape Cod.

Eighteen years ago, the New England Consortium on Deafblindness saved my family. My daughter was born deaf. We spent nearly a decade learning how to cope with deafness, with the emotional impact of having your dreams, desires, wishes for your newborn child dramatically adjusted. And that was the word, adjusted.

My daughter, my family, had all adapted to the unexpected challenges, with communication, with technology, with schools, with sports. But by the time she was 8, we had all adapted. Deafness was just part of who she was, part of who we were, and our lives had simply grown over the wound of the diagnosis, like tree bark over a lightning strike.  

Then she was diagnosed with Usher syndrome and our lives fell apart once again.

Usher syndrome is a genetic disorder. It was the cause of my daughter’s deafness. It also meant that she was now losing her eyesight.

My deaf daughter was going blind.

Almost two decades later, I still can’t write about the diagnosis without tearing up. And as one of the founders of the Usher Syndrome Coalition, the largest advocacy organization for Usher syndrome supporting thousands of deafblind families in dozens of countries, I am an expert on the disease. Yet remembering the receipt of that diagnosis still brings me knee-buckling pain. I have never felt such hopelessness. 

But when my family was most in need, when we were at our lowest, the New England Consortium on Deafblindness was there. They gave us hope, hope that our daughter would make friends, that she wouldn’t live a lonely life. They gave us confidence, confidence that our daughter would get an education, that she would get a job, that she would be able to support herself. And they gave us optimism, optimism that our daughter would live an independent, happy life. We would have been lost without them.

Now the Trump administration wants to take that hope, that confidence, that optimism for the future from deafblind families. The Department of Education has announced that it is eliminating funding for four deafblind projects across the country, including the New England Consortium on Deafblindness. 

Without these programs, newly diagnosed families will have nowhere to turn. Children will be at risk of sitting in classrooms without communication access or meaningful education. The pipeline of professionals trained in deafblindness, Braille and interpreting will collapse, leaving families without qualified support.

This is a desperate hour for people living with deafblindness and, unfortunately, the Deafblind Projects can’t save us this time. It’s our turn to save them.

Recently, my now 26-six-year-old daughter visited. She went to a party with friends from work because she has friends and she works. She got the job shortly after she graduated college because she went to college and got a degree in biology. She stayed for two days then took the bus back to her apartment because she lives independently and confidently takes public transportation because she has had mobility training.

In short, she lives a normal, happy life, the one we thought we’d lost when she was diagnosed with Usher syndrome.

She owes that life, in part, to the deafblind projects and she is just one of thousands who share that same debt. This is a government-funded project that not only meets its goals, but vastly exceeds them. It is worthy of our continued investment. Please help us spread the word on social media using #DeafBlindKids and #ProtectDeafBlindServices or write your representative and demand this congressionally approved funding be reinstated.

My family, my friends and the entire deafblind community thank you.