‘We try to keep a positive attitude about things even in the darkest times.’

Long Island

“My daughter Cadence is 15 and suffers from a rare condition, FoxG1 syndrome, a neurological disorder that makes her non-verbal and non-ambulatory, we do all the lifting, all the transferring. Cadence is one of 900 in the world to have FoxG1, she’s a rare gem. It’s amazing how much the gene controls everything in your body. It’s a doorway to so many other genetic disorders. How you retain things, how your body moves, how you eat, how you communicate. Not being able to say I’m in pain, I have a stomachache, it’s a huge issue. She has three types of seizures that are controlled with medication, she has 15 specialists. My house is full of equipment and we learn to work around it and be grateful that we have it.

Cadence is my whole world and I’m very involved in the special needs community, helping new parents entering this new scary world.

“Now that she’s a teenager, we’re dealing with that whole other issue of changing into an adult. I volunteer at Good Samaritan Hospital talking about feeding tubes, letting parents know that it’s not a bad thing, it’s actually a good thing and it can save your child’s life. It took my husband and I three years to come to the conclusion that Cadence needs a feeding tube. Cadence is my whole world and I’m very involved in the special needs community, helping new parents entering this new scary world.

“I’m a volunteer parent advocate in our school district, letting parents know what your child is entitled to with an IEP. That label entitles your child to getting more services. I’m involved in Angela’s House, which gives support to families with medically frail children. At age 3, Cadence joined, they were a huge shoulder to lean on. They helped us get a fully handicap accessible bathroom, we have a lift in front of our house. They found a family who was donating a huge conversion van and they donated that to us. We’re now involved with Breakthrough Intensive Physical Therapy in Islandia, using bungie cords so these children can weight bare.

“Cadence is taking independent steps, she is weight baring, shifting her weight. We still live our lives, we go swimming, we go to the beach. We try to keep a positive attitude about things even in the darkest times. It’s ok to feel alone, these feelings are normal and it’s ok to reach out and get that support.”