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Stony Brook Children’s Hospital

One Long Island kid is helping put smiles on the faces of patients at Stony Brook Children’s Hospital this holiday season. It all started when 9-year-old Sydney O’Sullivan of Holbrook was treated for kidney stones over three emergency room stays beginning in the Summer of 2021. While at the hospital, one of Stony Brook’s child life specialists paid her a visit with a toy in hand. Getting the toy helped take her mind off being in the hospital and that inspired Sydney to want to help others in the children’s hospital feel the same way.

“Some kids have to be in the hospital for Christmas, so I thought of a way I could spread some holiday cheer,” says Sydney.

Together with her mom Karen, Sydney made some chocolate reindeer lollipops to sell to raise money towards a toy donation. After posting on social media, Sydney was able to sell over 200 lollipops and raise $600 to purchase nearly 50 toys to bring to kids at Stony Brook Children’s Hospital.

“I am so proud of her,” says Karen O’Sullivan, Sydney’s mother. “She came up with this idea all on her own and is helping a lot of children.”

Sydney donated a stretcher filled with toys to the children’s hospital on December 17.

Photos courtesy of Stony Brook Medicine

On Dec. 3, musicians from the Stony Brook Music Department’s Instrument Petting Zoo caroled throughout the Stony Brook Children’s Hospital spreading holiday cheer and joy to the children, families and staff, thanks to funding provided by Island Federal. 

The Staller Center’s Instrument Petting Zoo is a program which helps the Staller Center for the Arts reach out to the community and share live interactive musical experiences for young people. 

“To be able to spend time at the Children’s Hospital and see the smiles on the kids faces and the tears of joy in the parents eyes as the musicians performed holiday music was emotional, but we’re so happy we were able to come together and collaborate in this way,” said Paul Newland, the Staller Center’s Outreach Director. “We are grateful to Island Federal who helped provide the support for this initiative and we’re already planning more musical visits.”

Reese Tiller, right, with his physician Dr. Laura Hogan, division chief of Pediatric Hematology/Oncology and director of the Pediatric Oncology Survivorship Program at SBCH, during the July 27 10th anniversary event. Photo from Stony Brook Medicine

Stony Brook Children’s Hospital gathered doctors, nurses, physicians and staff to celebrate their 10th anniversary of pediatric care this Tuesday, both in person and virtually. 

Throughout the years, SBCH has provided innovative research, clinical trials and breakthrough techniques to benefit pediatric patients. The hospital has more than 180 skilled pediatric specialists who cover more than 30 specialties.

“We have a long history of caring for children, and it was with the generational knowledge and passion that we made the commitment to create an institution that would better meet the needs of nearly half-a-million children in Suffolk County,” said Maurie McInnis, president of Stony Brook University. 

Even during the pandemic, SBCH had pediatric investigators on duty, researching the effectiveness the COVID-19 vaccine has on children. 

During the event, photos were displayed showing the history of Stony Brook Children’s Hospital. Photo from Stony Brook Medicine

Holbrook high schooler Reese Tiller attended the event and shared his experience with the children’s hospital that helped treat him when he had a cancer diagnosis. 

After a soccer accident left Tiller with a concussion, it was SBCH who found out through testing that he had a large mass on his chest which was discovered to be leukemia. 

“I was extremely confident that Reese was in the best place and was only going to get the best care possible,” said his mother Jaimi Tiller.

The Tiller family expressed their gratitude for SBCH and the effort it put into curing Reese’s illness. The hospital kept the family, including Reese, informed on every update possible. 

“The second I got there, I felt loved and cared for,” Reese said. 

The transition to the children’s hospital was easy for the Tiller family and despite being there for treatment, the overall feeling of the hospital was welcoming for all. 

SBCH has become a vital part of the academic and clinical mission of SBU and Stony Brook Medicine, which aim to provide the highest quality of education and training. 

With the dedication and passion of Stony Brook’s health care workers, SBCH has become a regional and national leader in children’s health care, and the first children’s hospital in the nation that created a center for the treatment of pediatric multiple sclerosis.

“You should all be proud of the outstanding clinical quality and breadth of services Stony Brook Children’s provides,” said Dr. Margaret McGovern, vice president for Clinical Programs and Strategy for SBM. “For me personally, it has been an honor to work with all of you and see your dedication and passion for improving children’s lives has been a daily inspiration.”

Coffee and snacks are available, and snacks have been individually wrapped during the pandemic. Photo from Stony Brook Medicine

The Ronald McDonald Family Room — a part of Stony Brook Children’s Hospital — has served as a sanctuary for parents and family members who have a child that is in prolonged care of the facility.

Officially opening in 2013, the purpose of the family room is to provide a respite space for parents to spend their downtime while their child is being treated in the hospital, whether that be long or short term. 

However, since the pandemic began, the lounge promptly shut down and is currently awaiting the green light from the hospital to reopen.

“It is sad because it shut down a great resource room,” said Tricia Telemaque, host and board member of the family room. “When we open really depends on the day-to-day and what happens with COVID. However, we are on alert and ready to go back full force.”

Coffee and snacks are available, and snacks have been individually wrapped during the pandemic. Photo from Stony Brook Medicine

The lounge emulates an apartment-style environment with countless amenities for family members such as a fully stocked kitchen, private showers and laundry machines.

Pre-pandemic, volunteers would solicit the community to have restaurants, pizza places and bigger chains such as Chick-fil-A and McDonald’s deliver food that the volunteers would serve to the families of the sick children. The lounge offered breakfast, lunch and dinner.

Providing emotional support for families is another key aspect of the volunteer work. Having a person to talk to could serve as a stress reliever for the unfortunate circumstances going on in a parent’s life.

“I remember one day I was sitting in the room and this one woman was folding her laundry and she asked, ‘Could I just sit and talk to you because talking to someone while folding laundry feels normal’ so it really is more of a solace room,” Telemaque said. 

According to her, the children admitted in the hospital also have siblings who come to the lounge and are often forgotten about. The volunteers make sure there are plenty of books and toys to play with, not only for the child admitted but for their siblings too. 

“The intent is to not have any white coats [doctors] in the lounge,” Telemaque said. “So, it’s not a place where doctors and nurses can come in.” 

One of the biggest goals for Ronald McDonald House Charities is to bring awareness to Long Islanders about what the lounge is and its purpose for the families that use it. 

Since the pandemic began, the organization has continued to work hard for families who were suffering through the COVID period. However, donations of food have become more complicated due to the need to have items individually wrapped such as chips and granola bars. 

The family room relies fully on donations from the surrounding community and businesses, as it serves approximately 3,600 families a year, so fundraising is essential for their need to remain active. 

“When I started working in the room, I was amazed at how few of my friends knew that there was a Ronald McDonald [room] here in Stony Brook,” Telemaque said. “So simple awareness that there is such a need for something like this is very important and I think that is an underserved opportunity.” 

The Ronald McDonald Family Room at Stony Brook Children’s Hospital has an area where families can sit and talk. Photo from Stony Brook Medicine

Among many parents who have used the family room, Karen Maher said using the room has been a huge stress reliever on both her and her daughter, who is undergoing cancer treatment.

“I look at the Ronald McDonald House as a blessing,” Maher said. “They really helped my daughter’s treatment go much easier for me and her. They’d bring little gifts for her too, something as simple as a teddy or a blankie.” 

With the help of the lounge and their conveniences, Maher was finally able to get the rest and relaxation she needed.

For more information on how to donate to the Ronald McDonald Family Room in Stony Brook Children’s Hospital, visit www.rmhcnym.org or call 516-775-5683. 

Joseph Mastriano, third from left back row, and Maddie Mastriano, second from right in back row, with friends during their first lemonade stand fundraising event in Stony Brook’s S-section in 2013. Photo by Alyssa Melillo

It’s been said that all good things must come to an end.

Joseph and Maddie in 2017 when the Three Village Kids Lemonade Stand was first held on the grounds of R.C. Murphy Junior High School. Photo by Rita J. Egan

Joseph and Maddie Mastriano, organizers of the Three Village Kids Lemonade Stand fundraising event, are currently planning the ninth and last one. The annual event, which to date has raised more than $100,000 for Stony Brook Children’s Hospital, will be held Aug. 9 at R.C. Murphy Junior High School.

Maddie, who will be turning 21, is attending Loyola University in Maryland and is a rising senior majoring in advertising and public relations. Joseph recently graduated from Ward Melville High School and is set to attend Stony Brook University in the fall. While he is undecided on his major, he is minoring in video game design.

The Mastrianos said the lemonade stand will leave them with tons of good memories due to the community members, local athletes and even celebrities who came out to show their support.

“I like to see everybody who comes to support us,” Joseph said, adding he realizes many are going out of their way from work or taking time out of their busy days.

Maddie added that friends and families have even come out of state from New Jersey and Connecticut to show their support. One highlight through the years was Chef Barret Beyer, from “Hell’s Kitchen” Season 11, helping them make a special fruit lemonade.

She said visits from Cheryl Pedisich, Three Village Central School District superintendent, are always appreciated as she has supported the endeavor since the beginning. Maddie added she also loves it when Joan Alpers, director of Child Life Services at Stony Brook Children’s Hospital, stops by.

Alpers said Joseph and Maddie are “amazing young people with, I imagine, extremely wonderful careers in front of them.” She said while the ending of the annual event is bittersweet, she hopes more young people will be inspired by the Mastrianos’ work.

“I’m so excited for all the good work that Maddie and Joseph have done, and I’m wishing Joseph a wonderful college career, and at the same time it’s bittersweet,” Alpers said. “We have had such a great connection with them, and we’ve not only enjoyed them but they’ve been so helpful in the community for us. But we understand that kids need to move on.”

Children playing with lemonade-colored slime at the Three Village Kids Lemonade Stand Aug. 8, 2018. Photo by Amanda Perelli

The fundraising event began in August of 2013 when the siblings decided to make lemonade and sell it outside their home with some friends. At first, they thought of splitting the few dollars raised between friends, but their mother suggested donating it to charity and they chose the local children’s hospital.

“If I were to go back into my 11-year-old self, I don’t think I would have imagined this lasting more than a summer,” Maddie said. “I couldn’t have seen it going the way it’s progressed, and I think it’s just a reflection of the community.”

Formerly known as the S-Section Kids Lemonade Stand, the booth attracted more and more people each year. Hundreds of residents from all over the school district and even local celebrities came to their home in 2016. Knowing that the lemonade stand was attracting too many people for a neighborhood booth, the Mastrianos moved the event to the grounds of R. C. Murphy Junior High School in 2017, and 500 people attended over the course of another hot August day. Besides lemonade, the kids have expanded to offer food, activities and live music, and also in 2017 they were among TBR News Media’s People of the Year.

Also, that year, the siblings began finding sponsors for the event. Many local businesses as well as larger ones such as Chick-fil-A and Island Federal Credit Union pitched in to help.

Bret Sears, president and CEO of IFCU, in an email statement said the Mastrianos approached them a few years ago. 

“Remarkable is the word that comes to mind when asked about Maddie and Joseph Mastriano,” Sears said. “Two young kids who had a goal of helping those at Stony Brook Children’s Hospital, and who have let nothing stop them from doing just that — not even a pandemic. When Island met them a few years ago and learned about their cause, it touched our hearts, and we knew becoming their corporate sponsor was something we needed to do.  It just felt right.  They certainly are two role models whom the youth of our communities should strive to emulate, and we are truly proud to call them our partner.”

In addition to all their sponsors and volunteers, the siblings said they are especially grateful for their parents and the support they have given them from their first lemonade stand.

“They’re just so supportive, and I don’t know who else would just willingly give up their front yard like they did those first couple years,” Maddie said.

She added that their parents have always been there to help to drive them around and in any way they could before, during and after the event.

“They just help us do everything they possibly could with keeping us as the lead and letting us guide them,” she said.

Maddie said it’s been surreal seeing some of the volunteers growing up, from elementary school children to young teenagers in middle school.

“It’s really cool to see how we’ve helped impact others and helped shape them wanting to give back to others in the community,” she said.

Joseph echoed the sentiment.

Police officers from Suffolk County Police Department’s 6th Precinct enjoy some lemonade in 2019. Photo by Rita J. Egan

“It’s just a nice experience to see how much everybody really cares about helping the community,” he said. “I love seeing the teamwork of all of our volunteers trying to make the event better, and then I love seeing just random community members coming in to try to help us.”

One volunteer who has been helping out the last few years is neighbor Courtney DeVerna, 11. Courtney said while she is sad that it’s ending, she is also proud of everything the lemonade stand accomplished.

“I just think that Joseph and Maddie are great people for doing this for so long,” Courtney said.

She remembers going to the lemonade stand when it was first held in front of the Mastrianos’ house.

“My mom told me when you get older, you’ll be able to volunteer, and I felt like I could do something for the community, and it was not only that, it was just so much fun,” she said.

Maddie said Aug. 9 will be an emotional day.

“Everyone uniting for the cause that we find so special — it’s amazing,” she said. “It’s hard to put into words.”

Last year, the siblings along with family members and friends were able to hold the event in a modified way despite the COVID-19 pandemic. During the afternoon, they hosted a drive-thru event at Murphy with fewer volunteers and later that day a virtual event that featured a Minecraft version of the stand. Despite the changes, the lemonade stand raised $35,000 for the children’s hospital.

As of now, the Mastrianos said they have to follow the same format this year but, if guidelines change, they do have a plan for a more traditional event. The goal is to raise $50,000 this year and fundraising has already begun with a GoFundMe page and teams from each school who are vying for the annual Lemonhead award that is given out to the team that raises the most money.

The siblings said they won’t forget how the community, elected officials, student-athletes and more who have supported them. Most of all they have been left with life lessons.

For Maddie, she said working on the lemonade stand shaped her college major as she has created the graphics for the posters and T-shirts.

“I think it really has helped me see that I can do advertising in the future if I really want to,” Maddie said. “I don’t know if that’s the path I’m gonna take, but it has shown me that I’m capable of doing that if I end up wanting to.”

For Joseph, he said it has helped him get out of his shell.

“I was a very, very shy kid,” he said. “I still kind of am, but the lemonade stand definitely threw me out there into the world.”

For more information, visit: www.threevillagekidslemonadestand.com.

Photo from TVDF

By Heidi Sutton

The Three Village Dads Foundation recently signed an official pledge with Stony Brook Children’s Hospital to donate $100,000 over the next 5 years to the Child Life Services program. A check in the amount of $10,000 was presented on April 21 in partnership with Jeff Hendel of Hendel Wealth Management.

Photo from TVDF

“Two years ago when our Foundation began it’s local philanthropic efforts, the Children’s Hospital was actually our very first recipient. What initially was supposed to be a small Three Village Dads group BBQ where I figured we could perhaps raise a few dollars for a great local cause, turned into something so much more. That event was wildly successful as we were able to raise $12,000 which opened our eyes to the effectiveness us Dads could have on our community,” said David Tracy, Three Village Dads Foundation President & Chairman. 

“When we established that relationship with Stony Brook’s Child Life program we immediately felt as connected and dedicated to their mission as their wonderful staff do. To now be in a position where we are able to deliver so much more to this great organization truly means a lot to myself, my board members, and our amazing donors. Jeff Hendel of Hendel Wealth Management joined as a co-donor with this presentation. It is generous donors such as Mr. Hendel that have enabled us to do the good we strive to do in Three Village,” he said.  

Pictured from left, Elisa Ruoff, Development Officer of Advancement at Stony Brook Hospital; Michael Attard, Child Life Specialist at Stony Brook Children’s Hospital; Vince DiCarlo, Three Village Dads Foundation board member; David Tracy, Three Village Dads Foundation President & Chairman; Jeff Hendel, Hendel Wealth Management President & CEO; and Three Village Dads Foundation board members Chris Carson and David Bitman.

Stony Brook Children’s Hospital Celebrates 10 Years with Long Island Aquarium Show. Photo from SBHU

For 40 years, Stony Brook University Hospital has been caring for kids, but 2020 holds an even more notable moment for Suffolk County’s sole children’s hospital. 

The outside of Stony Brook University Children’s Hospital. Photo from SBUH

Dr. Carolyn Milana, chair of the Department of Pediatrics and physician-in-chief at Stony Brook Children’s Hospital, said this year is a very special one. 

The children’s hospital is celebrating its 10-year anniversary as a standalone hospital, after opening its new building last year. 

“Our brand-new facility allows us to continue to provide the same expert care to the children and adolescents of Suffolk County in a state-of-the-art environment designed to promote healing,” she said. “All of the space within the children’s hospital, and the programs we offer, are designed to support both the child and their family throughout their hospital stay.”

At the new building, live feeds from the Long Island Aquarium are shown in the lobby and throughout the pediatric floors.

An inside look at the Stony Brook Children’s Hospital. Photo from SBUH

To celebrate its decade-long care, the children’s hospital teamed up with the Riverhead-based aquarium for a sea lion show virtually shown to supporters, patients and their families. On Dec. 9, viewers tuned in as the sea lion balanced balls, did tricks and posed in a delightful routine that kids and adults enjoyed.

The head of pediatrics at Stony Brook Children's Hospital said current restrictions on daily life has not meant young people have not been exposed to normal childhood diseases. Stock photo

The school and day care mixing bowl of bacterial and viral illnesses has changed. As schools, day-care centers, clubs, sports teams and other organizations change the way they manage group gatherings amid the pandemic, the game of illness tag children seem to play has slowed.

“We are seeing potentially less viral illnesses thus far in the sense that we have not seen an increase yet in respiratory syncytial virus, or RSV,” said Christy Beneri, Associate Professor of Pediatrics and Program Director of Pediatric Infectious Diseases at Stony Brook Children’s Hospital. “We are still waiting to see what happens with the flu.”

The chance of children contracting some of those illnesses would likely be less this year amid the infection control measures to reduce the spread of COVID-19, the disease responsible for the pandemic.

Beneri said children are getting somewhat fewer infections, although doctors are still seeing strep throat, ear infections and pneumonia.

Viral-induced asthma visits have declined at Stony Brook. Children who have asthma are still seeking medical attention, particularly if their condition doesn’t have a viral trigger.

At the same time, the effects of social isolation, uncertainty about the future, and household anxiety has triggered an additional mental health burden, particularly for adolescents.

Pediatricians are “asking patients more about those issues,” she said. “We maybe didn’t ask as much as we should have in the past.”

Even though children generally have less contact with their contemporaries this year, they are still developing illnesses, as their immune system receives challenges from microbes through dirt, pet saliva and other sources.

The dynamic is “slightly different in terms of getting some of these viruses from other people, [but] there are still pathogens in their environment,” she said.

In the current environment, with positive tests for COVID-19 setting new national daily records, Beneri said it is important to practice infection control measures in certain settings, which will impact what children are exposed to over time.

The cultural shift from sending children who might have mild symptoms to school to keeping children home for the good of their fellow students and staff has helped reduce the spread of COVID and other potential infections.

“We’ve taken a step back from what makes sense not just for my child, but for others my child might be exposing,” Beneri said. The decision about whether to send a child who might be battling an illness, cold or minor discomfort to school “is not just about us. It’s about those in our communities and, hopefully, there’s a better recognition” about the impact an infected child can have.

Some of the infection control measures, such as hand hygiene and staying home when children are sick should continue even after companies start providing a COVID-19 vaccine.

At this point, with the virus still prevalent in the community and country, she said acute care visits are declining, as parents are managing at home and are watching and waiting to see how their children recover from any infection.

As a parent, Beneri is dealing with the disappointment and disruption of life in the pandemic for her seven-year-old daughter. Twice, the family has had to cancel a trip to Disney World and has scheduled it for a third time.

Once the worst of the pandemic passes and children get back together again, the pediatric program director said there might be an increase in certain infections, but that doesn’t necessarily mean the county will see horrific outbreaks.

With the approach of Thanksgiving and the December holidays, Beneri urges families to be creative about gatherings. She suggested that smaller groups might want to get together over two weekends, rather than all gathering at the same time.

As for advice to schools, Beneri urges people to remain mindful of their activities outside of school.

“It’d be a shame to have to close schools,” Beneri said.

Beneri added people can celebrate milestones like turning 16, but they should not have a 40-person event in the current environment.

The exterior of Stony Brook Children's Hospital. Photo from Stony Brook Medicine

COVID-19, which was considered especially threatening to the elderly and those with underlying medical conditions, may also have triggered an inflammatory illness that is sickening children in several places throughout the world, including in Suffolk County.

An inflammatory illness in children with symptoms that mimic Kawasaki disease has sickened seven in Suffolk County and officials are expecting more cases of the rare condition here and throughout the country.

Stony Brook Pediatric Hospital has admitted two cases of the multi-inflammatory pediatric condition, for residents who are 10 and 19 years old.

With other hospitals showing rare but similar unusual pediatric cases, including in the United Kingdom and New York City, the U.S. Centers for Disease Control and Prevention is preparing to release an alert about the inflammatory condition, a CDC spokesman told CNN.

Symptoms of the new illness include an extended fever, a rash, red eyes, red lips, a strawberry tongue, lower blood pressure and abdominal symptoms like vomiting and diarrhea.

Stony Brook, Pediatric Hospital has been “treating patients like we would treat and approach Kawasaki Disease,” said Christy Beneri, the Fellowship Program Director in Pediatric Infectious Diseases at Stony Brook Children’s Hospital. The hospital has provided intravenous immunoglobulin, a high dose of aspirin and steroids to decrease inflammation and other medications to help suppress the inflammatory syndrome.

This rare inflammatory process in children has developed weeks after a likely mild or asymptomatic case of COVID-19 in mostly healthy younger patients.

Patients can develop symptoms from “days to weeks” after an infection with the virus that has caused the pandemic, Beneri said. The majority of people with this inflammatory reaction are either testing positive for COVID-19 when they come to the hospital or have a positive antibody test, which indicates their immune systems mounted a defense against the virus, Beneri added.

It is unclear to doctors what is causing the progression from a manageable response to the virus to an inflammation that may require a trip to the hospital and to the Intensive Care Unit.

“We are trying to understand how the coronavirus is causing vasculitis,” Beneri said. “It has something to do with how the virus is affecting blood vessels and organs.”

To be sure, Beneri reassured children and their parents that most of the children who are infected with Covid-19 will not develop these inflammatory symptoms later.

“The majority will do well,” Beneri said.

Nonetheless, Beneri anticipated that more pediatric residents in Suffolk County would likely show signs of this inflammatory response.

“If their child is having fever for a number of days, significant vomiting or diarrhea, belly pain, red eyes or a rash, it is important that they speak with their doctor,” Beneri said.

One of the reasons Suffolk County is seeing some cases of this Kawasaki-like response in children now, weeks after the pandemic infected thousands in the area, likely relates to the timing of the peak infections, which occurred in the middle of April.

Based on conversations Beneri has had with other pediatricians who are treating patients with similar symptoms, she said the patients tend to be “healthy kids” who have often had a contact with someone in their house who was recently diagnosed with COVID-19.

The child may have brought the virus into the home and passed it along to a parent, who became sick. The child, however, later develops these multiple-symptom inflammatory issues.

While some children have died from this condition, Beneri said the majority of them are recovering.

The duration of hospital stays has varied, with some patients requiring 10 days in the hospital, while others have recovered within a few days. Beneri said Stony Brook has already sent one patient home.

Beneri added Nassau County has also had several teenage patients come in with the same symptoms. She expects more Suffolk pediatric patients with similar symptoms to come to county hospitals.

Parents should be on the lookout, primarily, for persistent fevers over the course of several days with significant abdominal pain, Beneri said. “If they start developing other symptoms, such as red eyes and a rash and they are not getting better” then parents should contact their doctor or a hospital, Beneri advised.