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Lucia Anglade

Berlinda crawling before Dr. Wesley Carrion performed surgery on her two clubbed feet at Stony Brook University Hospital. Photo from Steve Kramer

A teen born with two clubbed feet is closer to her dream of walking on her own thanks to the efforts of Long Islanders and Stony Brook University Hospital.

When Steve Kramer, a retired Brookhaven National Laboratory accelerator physicist, traveled to Haiti last year through Life & Hope Haiti, a nonprofit founded by Haitian-American Lucia Anglade, he never knew what a profound impact his trip would have on one student’s life. It was while working at the Eben-Ezer School, built by Anglade in Milot, Haiti, he met 16-year-old Berlinda, who would crawl to get from one spot to another.

Berlinda with Steve Kramer, behind wheelchair, Lucia Anglade, left, and Dr. Wesley Carrion, after her surgery. Photo from Steve Kramer

Moved by her struggles, Kramer reached out to Dr. Wesley Carrion at Stony Brook University School of Medicine’s Department of Orthopaedics about performing surgery to fix Berlinda’s feet. Kramer sent the doctor copies of her X-rays, and Carrion told him he felt he could treat her and rotate the feet. He agreed to do it free of charge, donating his time and equipment.

“We looked at her and felt she had a fairly good chance of standing,” Carrion said.

After Carrion performed surgery on Berlinda in November, fixators — external frames that are attached by pins drilled into leg bones -— were used to rotate her feet to stretch the tendons. After the fixators were in place, Berlinda received outpatient services from the hospital, and she stayed at Anglade’s home on Long Island, according to Kramer.

The fixators were removed March 9 and Berlinda was put in leg casts until March 19. She has been working with physical therapists at the hospital, and while she can stand with braces with help, she has a long way to go before she can stand on her own.

“She was crawling around her village. She was unable to stand, so when we got her up with physical therapy, those were literally her first steps.”

— Dr. Wesley Carrion

Kramer said she has to build up strength, and she feels a lot of pain when she moves her left knee as it is locking up after not being used for months. However, he said she was pleased to be out of the fixators, which caused her pain at times.

Carrion said fixators can be painful, and when Berlinda’s wheelchair would hit bumps, the pain would increase.

“It’s tough when you got these fixator frames on that look like giant tinker toys that you attach to the limbs,” Carrion said. “They’re things that hurt. They’re things that are uncomfortable.”

Carrion said it’s difficult to determine if Berlinda will stand without braces. She had polio and did not receive proper treatment, and also has spina bifida. Carrion said despite a hole in her spinal column, it hasn’t presented any problems.

“If we can get her walking with braces, that’s a huge win,” Carrion said. “She was basically crawling around her village. She was unable to stand, so when we got her up with physical therapy, those were literally her first steps.”

Kramer said the hope is for Berlinda to stay until she completes physical therapy, which will take a few months, since she will receive better treatment in Stony Brook than in Haiti. To help with Berlinda’s airfare and outpatient expenses, Kramer set up a GoFundMe page.

Berlinda and the temporary casts she wore before getting leg braces. Photo from Steve Kramer

He said with money from that account, he can buy physical therapy equipment, like parallel bars so she can practice standing and walking outside of physical therapy treatments.

Kramer said during Berlinda’s stay in New York, it was the first time she saw snow, and he showed her how to make a snowball.

“She knew what to do with it,” Kramer said. “She wanted to throw it at me, and she did.”

Kramer said Berlinda, who will turn 17 April 13, loves learning, and despite attending school for only one year, easily solved basic arithmetic problems when he first met her.

“She never lost that bright smile and willingness to work with whatever she had,” Kramer said, adding that sometimes those with handicaps in her village are shunned and even her siblings have bullied her.

When Kramer first approached Carrion, the doctor informed him that he would also need to get the hospital to donate some of the costs for the November surgery. It was then Kramer reached out to Department of Medicine’s Dr. L. Reuven Pasternak, who serves as vice president for health systems and chief executive officer of Stony Brook University Hospital. Pasternak said requests like Kramer’s to waive charges are not unusual from doctors and members of the community.

“She never lost that bright smile and willingness to work with whatever she had.”

— Steve Kramer

“We do this from time to time, and the way it usually occurs is that a physician encounters somebody, oftentimes overseas, and in the course of doing a medical mission or in their travels,” Pasternak said. “And it’s somebody who has a correctable medical condition that will make a huge impact on their lives.”

While Pasternak was out of town during the surgery and hasn’t met Berlinda yet, he said Kramer and Carrion have kept him informed about her recovery and follow-up treatment.

“It’s a testimony to cooperation and collaboration because it required a lot of people to step up and say that this is important to do and basically volunteer to do it,” he said.

For more information about fundraising efforts to help Berilnda, visit www.gofundme.com/berlindasmiracle. To find out more about Life & Hope Haiti or to get involved, visit www.lifeandhopehaiti.org.

Steve Kramer raising money to bring Berlinda to U.S. to undergo surgery on her two clubbed feet

By Desirée Keegan

Through the efforts of a retired physicist, an orthopedic surgeon from Stony Brook University and a dedicated Haitian who has since moved to Long Island, a 16-year-old from Haiti is on a path with more open doors than ever.

Berlinda was born with two clubbed feet, though she is motivated to better herself, with the dream of one day walking on her own two feet. Steve Kramer, a retired Brookhaven National Lab accelerator physicist met the student in Haiti through Life & Hope Haiti, a nonprofit founded by Haitian-American Lucia Anglade, who built the Eben Ezer School in her hometown of Milot, Haiti.

Berlinda practices arithmetic. Photo from Steve Kramer

“She had only been at the school for a few months and she was already learning basic arithmetic,” Kramer said of seeing Berlinda back in March, after meeting her during her introduction to the school in December. “I gave her two columns of work and she handed it back to me with a big smile and said, ‘more.’”

Berlinda has spirit, according to many who have met her, and Kramer was so moved by the story that he reached out to Dr. Wesley Carrion at Stony Brook University School of Medicine’s orthopedics department about performing surgery to fix the girl’s feet. He agreed to do it free of charge.

When he contacted Carrion, Kramer said his secretary Joan mentioned he was deployed in Afghanistan and she didn’t know when he would return. Within a day or two she called to tell him she’d heard from the doctor, who said he’d return by April. In May, the two met.

“I sent him copies of Berlinda’s X-rays and the video and he said he felt he could treat her and rotate the feet, and he would donate his time and get the equipment donated,” Kramer said. “That was a big relief. I felt it might become a reality.”

Carrion had informed Kramer that he would need to get the hospital to donate some of the costs, so Kramer reached out to the Department of Medicine’s Dr. L. Reuven Pasternak, who serves as vice president for health systems and chief executive officer of Stony Brook University Hospital.

What the external cages look like that will be used to repair Berlinda’s clubbed feet. Photo from Steve Kramer

“He said they would cover her hospital costs,” Kramer said after his meeting with Pasternak in July. “This was a bigger relief since beside rotating the club feet we need to check out the status of the hole her spinal column might still have from the spinal bifida she was diagnosed as having. Everyone told me the hole doesn’t close up on its own, but she is doing so well that it may have, but it needs to be checked and closed if it is still open.”

To help bring Berlinda to the United States, Kramer set up a GoFundMe to raise money for her flight cost and other post-operation expenses.

“The fundraising has been going slower than I had hoped, even though everyone I contact is verbally supportive,” he said. “As a physicist my human appeal needs a lot of improvement to really move people to give. But then I look at the video and see the determination she has and feel she will deal with it as she has the tragic events she has already endured and I know she will persevere and will learn to walk.”

Following the surgery, Berlinda will be in the hospital for four months, getting her feet rotated to stretch the tendons as part of the healing process. Her legs will be in cages called external frames that will be attached by pins drilled into her leg bones. Because these create open wounds, it’s best for her to stay the hospital instead of returning to Haiti, to keep the wounds sterile. While recovering, she will continue to go through schooling, which will be one-on-one instead of in a larger classroom back in Haiti.

Without the construction of The Eben Ezer School, Berlinda’s struggles might never have come to light for Kramer. What began as a 10-child school back in 2001 has grown to population over 400, according to Anglade.

“I took the $7,000 I received from my tax return and decided I wanted to build a school in my home country — that had been my motivation,” said Anglade, who now lives in West Babylon. “I’m so blessed. I thank God for that, say thank you all the time. It’s a big school now, and we’re still helping.”

Berlinda crawls on her hands and knees because she cannot walk with her two clubbed feet. Photo from Steve Kramer

Anglade first visited Berlinda at her house, and heard from the 16-year-old how her brothers and sisters attended school, and she wished she could join them. Because the school is far from her house, she couldn’t walk there.

“I went to her house and she was quiet, said she can’t go to school,” Anglade said. “I told her I was going to help her, and I took her to the school. I pay someone to stay with her at the school. Her dream is to walk, to learn, to be someone. She wants to be happy.”

Kramer and Stony Brook University Hospital are making her dream a reality.

“Thank God for Steve — he has a good heart and I can’t do it by myself,” Anglade said. “With all my heart, I am so happy. Steve has put in a lot of effort to helping Berlinda make her dream come true.”

Kramer first visited the Eben Ezer School through Wading River’s North Shore United Methodist Church in 2015. He joined a group visiting Haiti in February, and has since visited three more times by himself and with Anglade. They are working toward improving the facilities at the school through solar power and updating the water system.

Kramer also provided economic opportunities for students and natives of the town. He cultivated a group of farmers that grow ancient Egyptian wheat, kumat, which is exported to the U.S.

Now, he’s trying to help provide a future for Berlinda.

“She’s very positive, she’s a sponge for learning,” he said. “I just want to help this Haitian girl who has had a tragic life story so far, but has kept her joy of life and has determination to improve herself.”

Sixteen-year-old Berlinda from Haiti will be receiving surgery on her two clubbed feet at Stony Brook University Hospital. Photo from Steve Kramer

Amy Miller, of Maine, who has helped Anglade since 2007, said she finds what Kramer is doing admirable.

“I met Berlinda and I really respect his desire to help her move forward,” she said. “You meet someone and they kind of capture your heart, and I think you have to follow your heart. That’s what he’s doing.”

Both said they are also moved by Anglade’s motivation.

“I am tremendously inspired by Lucia,” Miller said. “She’s a force. Lucia is a person that astounds most people that meet her — her energy and her commitment. She loves the kids and it’s wonderful to watch. The community once said she should be their mayor after she brought water to the school she also to the community. She’s quite something.”

Anglade said she’s just doing what she thinks is right, in giving back to her hometown.

“My four kids here go to school, they’re in college, they eat every day, but in Haiti, we don’t have enough to feed over 400 kids, so sometimes when we’re down there for a week or two, we can only feed them for one week,” Anglade said. “I can’t go every week, but if I could go every week, every month, I’d go, just to help them. For me to be able to go down there to help those students, my community, I’m so happy to do it. I really feel good about it.”

To donate to help get Berlinda to the United States and to receive the care and post-treatment she will need, visit www.gofundme.com/BerlindasMiracle. To find out more about Life and Hope Haiti, or to get involved, visit www.lifeandhopehaiti.org.

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Diane Burkhardt, a member of the North Shore United Methodist Church for the last 11 years, is seen below smiling with children she helps through the organization Life and Hop Haiti. Photo from Hal Low

Don’t let its size fool you — the North Shore United Methodist Church in Wading River may be small, but the variety of outreach and support programs it has reaches across the Island.

“Sometimes there are certain people who are going through a difficult time and I think extending a hand and caring helps restore some hope that things are going to be okay,” said Diane Burkhardt, a member of the church for 11 years who is a retired Shoreham-Wading River middle school teacher. “People are so appreciative and thankful, which makes the whole experience gratifying and fulfilling. It makes you really appreciate what you have, which is humbling.”

Burkhardt said she is fortunate enough to be the team leader for the church’s outreach program, working on volunteer efforts like the Helping Hands Fund, which includes a food pantry that assists about 50 families in the Shoreham-Wading River area on a regular basis, and its back-to-school project, which provided school supplies to 30 children in need this past September.

Volunteers also deliver food to people’s homes, drive those in need to doctor’s appointments, help out with the church’s thrift shop, and deliver meals to and spend time with residents of Maureen’s Haven, a shelter service for homeless adults on the East End.

The North Shore United Methodist Church in Wading River is involved in a myriad of projects from helping its church members to the needy across Long Island. Photo by Giselle Barkley
The North Shore United Methodist Church in Wading River is involved in a myriad of projects from helping its church members to the needy across Long Island. Photo by Giselle Barkley

“Food is tangible, but what comes with it is the intangible quality of hope,” Burkhardt said. “I’m one of a dozen or so active members that are retired and put in a lot of hours because we feel we were all given gifts and skills that can be put to good use helping people.”

Linda McCall, of Center Moriches, has been attending North Shore United Methodist for four years and said she most enjoys spending her time helping those at Maureen’s Haven in Riverhead, while also volunteering through Helping Hands to provide gifts to children and meals to families around Christmas.

“It’s a very small church, and for such a small church we have so many outreach programs going that I found it almost impossible not to get involved,” she said. “It’s one of the things that keep me happy to be here on the Island. I moved here from Las Vegas, so I don’t have any family here, and the church has become my family. Volunteering fills my days with joy and happiness.”

Priscilla Hartman, a Shoreham resident who has been attending services for the last 35 years, said that as the church’s team leader for its membership care program, she finds it rewarding when she can help someone.

The program helps church members get to the pharmacy when they are temporarily ill, don’t have transportation or otherwise can’t leave the house. Volunteers also cook for them or clean their houses.

“It’s a great feeling when we’re helping a homeless person or someone who is down on their luck and seeing them get back on their feet,” she said. “I’m glad that my church is very ministry-oriented. I think it’s a good way for us to act. We’re a small church, but there’s nothing too large for us to take on.”

One example is the church’s partnering with Life and Hope Haiti, an organization founded by Lucia Anglade of West Babylon, who formed the Eben Ezer School in her hometown of Milot, Haiti.

Donna Eddy, who runs a craft group and is also involved with Maureen’s Haven and the thrift shop, said it’s these relationships people make with other community members and those they help that count in life and define who they are.

“I think we are all wired to need and to learn from each other,” she said. “You can’t love, have forgiveness, experience kindness, faithfulness and unselfishness unless you’re involved in the community. People need other people.”

And one person everyone at North Shore United Methodist agreed they need, is Burkhardt.

The North Shore United Methodist Church in Wading River gets together food for the less fortunate during the holidays. Photo from Hal Low
The North Shore United Methodist Church in Wading River gets together food for the less fortunate during the holidays. Photo from Hal Low

“She has an incredible amount of energy and her enthusiasm is infectious,” Pastor Hal Low said. “Nothing ever seems to daunt her. She’s an inspiration to others, including myself.”

Eddy agrees.

“She’s focused, driven and she makes you want to be the best that you can be and give all that you can, because that’s what she does,” she said. “She’s a wonderful model She gives selflessly her time, her energy. If you need something, Diane will be there. You can count on her.”

But Burkhardt doesn’t want to take any of the credit, because she said without the rest of the organization, there would be no outreach ministry.

“I’m part of a whole congregation and I couldn’t do anything alone,” she said, adding that other churchgoers also help by recycling cans and bottles to raise money for lunches for the children in Haiti for instance. Members are also currently providing dinner to children whose parents are both in the hospital while the father is ill, and have been helping transport a man in Bellport, previously of Maureen’s Haven and a home in Middle Island, to and from Sunday services since 2011.

Burkhardt said that she frequently recalls things Shoreham resident and longtime churchgoer Doris Olson used to tell her when she was heavily involved in outreach in her younger years.

“Whenever I’m dealing with someone that can maybe be hard to deal with, she always said, ‘God made that person, too,’ and that brings me right back in touch with what I’m really doing and why I’m going it,” Burkhardt said. “Every day, try to be a blessing to someone else.”