‘My life’s work is to stop the stigma of epilepsy.’

Massapequa Park

“They thought I had meningitis. They gave me last rites, told my family I was going to die, but I didn’t. A few months later, I went to see a neurologist, and he told me I was having seizures. I went to see an epileptologist, and they discovered I was having 100 seizures a week on 28 pills a day.

“They said, it’s time to be evaluated for brain surgery. It was very scary for me and my family. My kids were only 5 and 11 at the time. I did a year of evaluation and discovered I was a candidate.

“The first step of brain surgery was grids, and I had a blood clot at that point. I had to be rushed back into surgery, take the grids out, go home for two months, wait for the clots to dissipate. Then I did a resection; so I have no right brain. The seizures stopped, and I was doing great.

“Four years later, I was working all the time and was so sick, but no one could diagnose me. It was a feeling of car sickness. After about two spinal taps, two cases of Bell’s palsy, they discovered I had late-stage Lyme disease.

I had to have part of my brain removed because not enough money is put into epilepsy research and treatment.

“I did 30 days of doxycycline and 30 days of IV antibiotics, but it never fully went away. I have arthritis in every joint, and all the antibiotics destroyed my teeth. This was in 2013.

“In 2018, my dog started doing nose-to-nose with me and would snarl, and I was afraid she was telling me I was having a brain bleed. Not even two weeks later, a mass formed on the side of my neck. I was then diagnosed with large B-cell non-Hodgkin lymphoma.

“I did six rounds of chemo, and I’m in remission now. I was doing a lot of crying. Like why me? I’ve been sick since I was 18 months old, on and off.

“I lost my sister-in-law in 9/11. She was in the North Tower. And I was very affected by her shoes by the door because she was expecting to come home that day. And I came to the realization that she had no choice. I have a choice, so I choose to fight. I trained to become a peer counselor, and I counsel others with epilepsy and non-Hodgkin lymphoma.

“I spoke to the House [of Representatives] about the underfunding of epilepsy. It is kind of barbaric. I had to have part of my brain removed because not enough money is put into epilepsy research and treatment. My life’s work is to stop the stigma of epilepsy.”

‘I always say I am my happiest when I am surrounded by my family and friends eating great food.’

Massapequa Park

“I always say I am my happiest when I am surrounded by my family and friends eating great food. My mom is from Italy and my dad is from Lebanon. Growing up, I was blessed to have been exposed to two incredible cultures and always cooking and learning recipes from each. I especially love keeping traditions alive like making sauce every summer with my Italian side and baking cookies for Easter with my Lebanese side.

“The kitchen is the heart of our house and being able to share recipes and cook together has always been a big part of my life. I always loved trying new foods around the world, dining at different restaurants, and taking pictures. I decided to start a passion project combining a few of my favorite things into one page: food, photography, restaurants, and travel. That is when I started @travellongisland to create a place where people can learn about great restaurants, activities, and ask me about Long Island and all it has to offer.

Especially after everything we have gone through these past couple of years with COVID, it’s so important to do something that makes you happy.

“At first, some friends poked fun at the idea, but I wasn’t letting that stop me! I was so passionate about it and it showed. I now have almost 50,000 followers and have worked with some incredible businesses. I love when I go to restaurants and they donate part of their proceeds to charities. That’s a great aspect because I’ve always been interested in giving back and will definitely incorporate a service component to my blog going forward. My focus is to display places that I truly believe are the best on Long Island, NYC, and wherever I am traveling.

“I often go back to places to ensure consistency because that is key. I also started a new series sharing recipes with my audience which has been a great way to incorporate my culture as well as various dishes I have enjoyed over the years. Especially after everything we have gone through these past couple of years with COVID, it’s so important to do something that makes you happy. I love being able to experience new places and sharing that with people that follow me. I have also met some of my best friends through this which I am forever grateful for. I am excited to continue expanding my blog and working with different restaurants and companies with social media marketing.”

‘I come from a family of nurses, so I guess it’s kind of in the blood.’

Massapequa Park

“I come from a family of nurses, so I guess it’s kind of in the blood. It probably goes back to my grandmother. She had nine children, lived in a small county called Mayo in Ireland and helped deliver babies and care for the sick. You know, back then there was no degree to do that. I guess it just came from something innate in herself.

“As the director of patient care services for women and children’s health at Huntington Hospital, I oversee labor and delivery, maternity, nursery, the special care nursery and pediatrics. I think, for all of healthcare, being hit with the pandemic was challenging at every level. Once we knew that there were more patients being admitted with COVID and more space was needed to be able to care for them, there were discussions about possibly having to utilize our postpartum unit as a medical unit for COVID patients. We had to then look at what we could do safely for our families after they delivered: where could they go to recover for a few days, as well as now assisting the staff that are normally on the postpartum unit to be able to care for medical patients with COVID.

We recently just had a family who delivered during the height of COVID and experienced the offsite location and were blessed again to come back and have another baby the following year. They were so happy with their standard of care at the offsite location that they chose us again for their next delivery.

“Our obstetrical patients would come in and deliver here. And then after they were stabilized and assessed, they were then transferred to an offsite location to continue their postpartum stay. Thank goodness that was a very short-lived moment in time; about a week. Once they saw the numbers trending where they needed to go, we were able to pull back very quickly and transition right back into our regular business, caring for mothers and babies and their families here at the hospital.

“We recently just had a family who delivered during the height of COVID and experienced the offsite location and were blessed again to come back and have another baby the following year. They were so happy with their standard of care at the offsite location that they chose us again for their next delivery. They were of course very ecstatic to not have to be transferred anywhere now, and they were able to go out to their private room in the postpartum unit to enjoy their stay. And it was amazing to be able to be with them again and experience the joy with them.”

‘To write a book was my lifelong dream, and it’s even better to have it be about the subject that I love the most.’

Debra O’Fee, Massapequa Park

“At the age of 3, Ryan was diagnosed with Pervasive Development Disorder. At the time, I didn’t realize that PDD was autism. When my son was 4, I wasn’t sure what his abilities should be. I decided to keep a journal of what was going on with Ryan. Later, when I would read back, I’d be crying or laughing, or I’d be frightened because I couldn’t believe we had lived through the experience.

“We eventually learned that Ryan would elope, which happens in 48 percent of children with autism. He’ll wander or disappear. There was one episode when he was 5 and he was missing for 20 minutes. It was terrifying because he is nonverbal and unaware of things like cars, streets and bodies of water. Luckily, it was resolved. Later that day, I went to find books on children who wander and I couldn’t find any. There were plenty of books about autism parenting, but none focusing on our immediate concern. I took my journals and turned them into my book, ‘I’m Sorry Jimmy Muscle: Why My Son with Autism Wanders.’

I feel like the book is a love letter to my children. This, along with my children, will be my legacy, no matter how many people read it.

“Readers are telling me they laughed so hard they cried and that they learned so much from it. To write a book was my lifelong dream, and it’s even better to have it be about the subject that I love the most: helping special needs children and their parents. Plus, I got to write it about my two sons.

“What I find even more fascinating than Ryan and his autism is watching my older, neurotypical son, JT. He doesn’t have pre-conceived notions or judgments. When something was going on with Ryan and we wouldn’t know how to deal with it, sometimes we would look to JT to see what his natural response was.

“‘I’m Sorry Jimmy Muscle’ is named after a boy that I grew up with. I believe he has autism, but we didn’t know about autism when I was growing up in 1982. Jimmy Muscle got that nickname because he would come up to us and say, ‘Can I feel your muscle?’ Many kids would be mean and run away screaming. I hadn’t thought of him for more than 20 years. Then I had Ryan and all of those memories came back. Now, Ryan is 11 and JT is almost 13. I feel like the book is a love letter to my children. This, along with my children, will be my legacy, no matter how many people read it.”

‘I’m so incredibly thankful for how far he’s come, because I know we’re one of the lucky ones.’

Massapequa Park

“I was 20 weeks pregnant and went to my regular OBGYN and they told me the baby’s not cooperating, you have to go somewhere with better machines. I didn’t think anything of it, so I went to a specialist and they had me there for six hours because again, the baby wasn’t cooperating. On the sixth hour, one of the technicians saw something that didn’t look right. It was one of those moments you’re on the outside, looking in. I was like, ‘what the hell did you just say?’

“All of a sudden, there’s two cardiologists, two specialists and six techs in the room. They said your baby has transposition of the great arteries. It was one of those moments you’re on the outside, looking in. I was like, ‘what the hell did you just say?’ They explained he had a heart defect and he wouldn’t be able to survive unless they repaired it at birth.

“When I had him, I couldn’t jump into the mommy role. I wasn’t allowed to change his diaper. He was on a feeding tube so I couldn’t feed him. I didn’t hold him until he was 9 days old. It’s a different experience when you have a baby and they take him away immediately. I held him for 10 minutes and then he was put into a seven-hour open-heart surgery.

He went through so much but alongside him I went through so much, and I almost feel that we healed together.

“Fast forward and he’s the light of my life. There’s something about him, he pulls on the heartstrings. He’s 20 months old and for the most part, he’s been developing as a normal average baby. They did tell us to expect cognitive delays as he gets older. He’s still not speaking. He hasn’t said ‘mama’ and that’s hard for me. He went through so much but alongside him I went through so much, and I almost feel that we healed together. I feel like him saying ‘mama’ is the light at the end of the tunnel for me. I feel like I’ve earned it at this point.

“He goes to the cardiologist every four to six months and he will for the rest of his life. There’s a 20 percent chance he’ll need another open-heart surgery. We take his life appointment to appointment. But I’m so incredibly thankful for how far he’s come, because I know we’re one of the lucky ones.

“I think out of my entire family, I’m the one healing from it the most. I want him to be proud of what he’s gone through and in him being proud of what he’s gone through, it’s helping me heal. I’m so proud to be his mom.”