Shriners Children's New England Newsletter

YOU CARE Because A NEWSLETTER FOR FRIENDS OF SHRINERS CHILDREN’S NEW ENGLAND

“The best decision we ever made”

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contents | fall 2022

03 The Best Decision We Ever Made 06 Ways to Give 07 Ian: Patient Ambassador 08 Go Theo, Go! 09 Welcome Dr. Luedtke 10 Proud Supporters 11 ThankYou

Greetings! I’m so excited to introduce myself to you in my first year as administrator of Shriners Children’s New England in Springfield. Previously, I served as the Chief Nursing Officer/ Director of Patient Care Services here and am honored to take the lead during such a milestone year. The Shriners Children’s healthcare system is celebrating its 100th anniversary! While much has changed since 1922, we have remained true to our three-part mission of providing care, conducting research and offering educational opportunities to medical professionals. We also continue to honor and keep the promise to provide care and services regardless of a family’s ability to pay or insurance status. Our healthcare system’s incredible history of generosity, compassion, growth, exploration and innovation is alive and well in Springfield. Our medical and clinical staffs have been caring for kids throughout western Massachusetts and all over New England since 1925. Our patients continue to inspire us with their grace, thankfulness and inner strength as they overcome one challenge after another. We cannot do what we do today without the hope, compassion and giving from our amazing donors. Thanks to you, Shriners Children’s New England will continue to be a place of hope, where dreams are achieved and lives are changed every day. As 2022 comes to a close, I look forward to another century of promise and opportunity and wish you the best in 2023! Sincerely,

Because YOU CARE Shriners Children’s New England 516 Carew Street Springfield, MA 01104-2396 413.787.2000 ShrinersNewEngland.org

Frances Marthone, Ph.D., RN Administrator

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“The best decision we ever made:” CLEFT LIP AND PALATE CARE AT SHRINERS CHILDREN’S NEW ENGLAND

Adopted from China between the ages of one and three, Matt, Teddy and Bethany were all born in need of cleft lip and palate care. Each had surgery prior to their adoptions, but required more extensive treatment after arriving in the United States. While their parents, Melissa and Andy, had some initial success finding experienced providers near their home in Albany, NY, it required an enormous amount of research. They struggled to find appropriate orthodontic care for all three children, getting different answers from each specialist they visited. Matt and Teddy both had issues with their speech and had difficulty being understood. No one could provide the family with a clear path forward. “I had exhausted everything that was available to us in Albany, and our insurance company had classified everything else as “cosmetic” and not

necessary to seek out-of-town care,” said Melissa. “I had nowhere to turn to help my kids.” At the height of the family’s frustration, a billboard went up in downtown Albany advertising the services available at Shriners Children’s New England in Springfield, MA. Melissa contemplated making a phone call to get more information. Then, that weekend, her parents took the kids to the Big E, New England’s Great State Fair, in West Springfield, MA, where they spoke to a kind man who told them about the cleft lip and palate care available at Shriners. That man turned out to be Philip Stoddard, M.D., a renowned plastic surgeon from Shriners Children’s. “My parents relayed the information to us, and I made the call on Monday,” said Melissa. “The rest is history - it has been the best decision we ever made for the health of all three kids!” >> cont. on page 4

Text Pictured (L-R): Bethany, Melissa, Andy, Matt and Teddy.

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“The best decision we ever made:” Cleft lip and palate care at Shriners Children’s New England cont. from page 3

sigh of relief knowing that there would be a highly researched and successful treatment plan for each of our children.” The family travels to the Friday cleft lip and palate clinic about every four to six months for follow up care. Instead of feeling anxious about the medical appointments that await them during the 90-minute drive, everyone actually looks forward to each visit. “They love the clinic, because there is always some sort of present,” said Melissa. “The fun environment and the incredibly nice people are all part of the picture that reduces stress for kids.” That allows all three teens to stay focused on their busy lives. Matt, 16, is enrolled in a highly selective public school program for aviation in upstate New York. He is also an extreme athlete, making it to the U.S. Nationals for freestyle skiing in his first year of competition. Influenced by the treatment he’s received at Shriners, Teddy is interested in pursuing a medical career. He is 15, plays bass in his school jazz band and runs cross country and track. Bethany had significant delays when she came to her family from China at age 2, unable to walk, crawl, talk or chew. Now 13 and an active 8th grader, she backpacks and kayaks, plays lacrosse and participates in Scouts

MATT

ON THE RIGHT PATH Both Matt and Teddy had pharyngeal flap surgery at Shriners Children’s, performed by plastic and reconstructive surgeon Kristin Stueber, M.D. This procedure addresses nasal speech by lifting a flap of tissue from the back of the child’s throat and attaching it to the back of the palate, which prevents air from leaking out through the nose when speaking. Matt and Teddy now speak clearly and no longer require speech therapy. Teddy had additional bone graft surgery which was equally successful. Bone grafts help cleft lip and palate patients by improving bone structure, development, and overall appearance. Bethany had bone graft surgery this fall and was much less nervous about this next stage of treatment after seeing her brothers’ speedy recoveries. The family also found the orthodontic care they were seeking from Aaron DeMaio, D.M.D., an orthodontist on the cleft lip and palate team. “We have been to so many different medical facilities, and nothing compares to Shriners,” said Melissa. “This team of professionals were the most experienced doctors and therapists that we have ever encountered, and it was such an incredible

TEDDY

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BSA. According to Melissa, Bethany is always the most cheerful person in the room. For Matt, Teddy and Bethany, one of the biggest benefits of being treated at Shriners is the sense of belonging they feel. “It is the most welcoming, incredible facility we’ve ever seen,” said Melissa. “My kids come in to the monthly clinic and see others who look just like them. They have made friends and chatted with their peers about surgery.” LIVES CHANGED The whole family has formed special bonds with the staff at Shriners Children’s. Melissa is grateful for the incredible pre and post-op care her kids have received, recalling a time Teddy played Connect Four in the pre-op room for a full hour with a member of his care team. “Our kids’ lives have been changed by Shriners Children’s,” she said. After 5 years of being Shriners Children’s patients, Melissa is passionate about helping others by sharing her family’s experience. “Shriners took the guesswork out of the treatment plan for me so that I could focus on parenting, instead of the incredible amount of medical research that I had been doing,” she said. “Parents shouldn’t have to spend that much time trying to assemble their own team, when the best team already exists at Shriners!”

BETHANY

Remembering Dr. Stoddard

The Shriners Children’s New England family mourns the loss of Philip Stoddard, M.D. Known for his dedication and gentle demeanor, Dr. Stoddard touched the heart of every staff member, patient and family who knew him. Dr. Stoddard began working at Shriners Children’s New England in 1987, and served as Director of the Cleft Lip and Palate Clinic from 1998 until his death in March 2022. His strong vision led to the creation of a robust cleft lip and palate program, including a wide range of specialists to help deliver the best outcome for each patient. He leaves a legacy of compassion and professional excellence that will never be forgotten.

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WAYS TO GIVE There are many ways to support Shriners Children’s mission today and tomorrow. In addition to financial gifts, which make our current work possible and help shape the future of health care for children with special needs, planned giving ensures we can continue to provide the most amazing care anywhere for generations. Here’s how you can help:

• WILLS, TRUSTS AND BEQUESTS - Identify Shriners Children’s as a beneficiary in your will or trust. • DONOR-ADVISED FUNDS - Like a charitable savings account, you put money in and receive the tax benefit; potential growth is tax-free. An amount of your choice is sent to Shriners Children’s in the form of a grant. • EMPLOYER GIFT MATCHING - Your employer matches (or doubles and sometimes triples!) your charitable donation. • CHARITABLE GIFT ANNUITIES (if permitted in your state) - Transfer of cash or other assets to Shriners Children’s in exchange for guaranteed regular payments to you for life. When your gift annuity ends, its remaining principal passes to Shriners Children’s. • GIFTS OF APPRECIATED ASSETS - A contribution of long-term appreciated assets e.g., stocks, bonds and/or mutual funds. No capital gains taxes to be paid and you may be able to claim the full, appreciated amount as a charitable deduction up to 30% of your adjusted gross income. • GIFTS OF LIFE INSURANCE – Designate Shriners Children’s as the irrevocable beneficiary and owner of a fully paid-up insurance policy, if permitted in your state. • IRA CHARITABLE ROLLOVER - If you are age 70 ½ or older, you may make tax-free charitable gifts of up to $100,000/year directly from your Individual Retirement Accounts. • LIFE ESTATE AGREEMENTS - A personal residence or farm may be given as a charitable gift. You retain the use of the property for life. • VEHICLE DONATION – Donate any vehicle, running or not, including cars, trucks, trailers,

Call 413-735-1285 to learn more about any of these giving options. • NON-MONETARY GIFTS - Purchase items from our AmazonSmile Charity List to be sure your gift will be meaningful and useful to patients and families in our care and delivered safely and securely to our location. boats, RVs, motorcycles, campers, off-road vehicles, planes, heavy equipment, farm machinery and most other motorized vehicles, towed at no cost to you. • SHOP WITH AMAZONSMILE – Do your regular Amazon shopping at smile.amazon.com, select Shriners Children’s as your preferred charity and Amazon will donate .5% of the eligible purchases to us.

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spotlight

Ian: Patient Ambassador Ian was born in China with an upper limb difference and lived the first years of his life in an orphanage. His adoptive parents, Jennifer and Seth, brought Ian home to western Massachusetts and within a month, they brought him to Shriners Children’s New England. He received a prosthesis that, after an adjustment period, became a tool of empowerment. It enabled Ian to talk with his peers about limb difference and for them to gain awareness about physical differences. A new confidence in his own abilities has led Ian to play baseball, soccer, basketball, swim and surf. With the help of special prosthetic attachments made by Shriners Children’s prosthetic and orthothic services, Ian also enjoys mountain biking and kayaking. Now 12 years old, Ian is an active patient ambassador. Articulate and engaging, he is always willing to share his story to support Shriners Children’s and help other kids like him. Ian’s family also participates in donation and fundraising efforts. Most recently, Ian’s team, the Flying Clubs, was the top fundraiser at Shriners Children’s Putting for a Purpose Mini-Golf Event . We can’t wait to see what he conquers next!

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GO THEO, GO!

The x-rays showed exactly what Adam had suspected, a clear dislocation of Theo’s left hip. Known as developmental hip dysplasia or DDH, the condition occurs in babies and children when the hip joint has not formed normally causing the ball of the thighbone to be outside the hip socket. In the United States, approximately 1 to 2 babies per 1,000 are born with DDH. It usually affects the left hip and is predominant in girls and pediatric orthopedic surgeon Rubini Pathy, M.D., and introduced her to Theo’s parents. Dr. Pathy explained Theo’s diagnosis to Ellie and Lucien and reviewed treatment options. For a dislocation, surgery is the preferred option in order to obtain a normal hip shape and normal hip function, while minimizing the risk of early hip osteoarthritis. babies born in breech position. Adam immediately consulted with

Theodora (Theo, for short) is a vibrant, spirited and active toddler who has one speed: go! Whether it is splashing through puddles, chasing her older sister, Lucy, or exploring a new art project, this little one brings her family big joy. When Theo was a baby, her parents, Ellie and Lucien, noticed that she often leaned to her right side, and dragged her left leg a little when she crawled. By 14 months, she had a noticeable limp when walking, but, despite regular checkups with her pediatrician, Ellie and Lucien were reassured there was no cause for concern. When Theo’s daycare provider also voiced concerns about Theo’s gait, Ellie and Lucien decided to get a second opinion. They brought Theo to Shriners Children’s New England. Orthopedic specialist Adam Iwanski, PA-C, identified an issue within minutes of his examination of Theo. “I found that she had slightly less range of motion at the left hip compared to the right,” he said. “In addition, she appeared to have a leg length discrepancy. I recommended we take x-rays to further evaluate her hips.”

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“When we learned Theo would need surgery, we were in shock and so devastated,” said Ellie. “Theo had all of the signs; less mobility on one side, limping and even legs of different lengths. It was difficult to understand how this was missed before. We were so overwhelmed but I will never forget the kindness, patience and reassurance that was shown to us that day. I knew we brought Theo to the best place to help her.” According to Dr. Pathy, surgery could help Theo avoid pain, limping, early degenerative changes in her hip or even a possible total hip replacement as a young adult. One week later, Dr. Pathy performed an open reduction and femoral osteotomy to shorten Theo’s thighbone to properly fit the bone into the socket. The day, Ellie recalls, was the longest and hardest day of her and her husband’s lives. “We were overwhelmed but the nurses and child life specialist, Annie, comforted us and kept us updated with each minute that passed.” Although not an easy decision for Theo’s parents, they know they made the right one for their family. “Surgery gave Theo the best possible chance to remain active, with as little pain as possible throughout her life,” said Ellie. Post operation, Theo wore a hip cast for nine weeks to assist in the healing process. She recently had this cast removed, and is now in a rhino brace, which she will wear for 20 hours a day for the next few months. According to Theo’s parents, she is already on the go and is as silly as ever - all thanks to Shriners Children’s. “I knew we brought Theo to the best place to help her.”

This summer, Lael M. Luedtke, M.D., joined the Shriners Children’s New England care team as medical director. Dr. Luedtke is an accomplished pediatric orthopedic surgeon with 22 years of experience. Most recently, she served as the medical director for Shriners Children’s Twin Cities. Dr. Luedtke earned her medical degree and completed her residency in orthopedic surgery from the University of Minnesota. She completed a fellowship in pediatric orthopedic surgery at Children’s Hospital of Philadelphia. She is board-certified by the American Board of Orthopedic Surgery. Dr. Luedtke is a member of the Pediatric Orthopedic Society of North America, the Scoliosis Research Society and the American Academy for Cerebral Palsy and Developmental Medicine. Areas of special interest to Dr. Luedtke include early onset scoliosis, surgery for cerebral palsy, hip replacement surgery and limb deficiencies. Dr. Luedtke’s family includes her husband, Gary, their Newfoundland dog, Lester, and several chickens and horses. WELCOME DR. LUEDTKE

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PROUD SUPPORTERS

community

Sunsetview Farm Since 2012, Sunsetview Farms has raised over $106,000 by hosting different types of fundraising activities throughout their camping season. Last year, they presented us with us with a check for $19,000!

The Sweetest Gift Last summer, 3 year old Dawsyn sold lemonade to help kids with “boo-boos,” and raised $1,000, which was then matched by her father’s employer Callaway Golf.

Holiday Tips Last holiday season, the generous servers and staff at Gio’s Pizzeria in Hampden pooled their tips and donated them to Shriners Children’s New England and two other charities.

Florence Bank’s Customers’ Choice

Last year, Florence bank customers chose Shriners Children’s New England among their charities of choice to receive the bank’s Customer’s Choice Community Grant.

Truckload of Love Bill Collins, owner of Center Square Grill in East Longmeadow, donated so many LEGO sets they were delivered in an Arnold’s Meats box truck!

Top 10 at Monson Savings Monson Savings asked the community to vote who the bank should support in the coming year. Shriners Children’s New England was grateful to be among the top 10 vote-getters!

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PUTTING FOR A PURPOSE! Thank you to the donors, sponsors, golfers and volunteers who supported our Putting for a Purpose event this past September at Fenway Golf in East Longmeadow, MA. Together we raised $150,000 to provide the most amazing care in western Massachusetts.

That is why Shriners Children’s New England has the greatest donors – because you give with your heart and know that every dollar matters when it comes to transforming the lives of children in need. Because of your support, each year more than 12,000 children are cared for at Shriners Children’s New England regardless of their insurance status or ability to pay. Sixty-five percent of those patients receive some form of charity care. Eighty cents of every dollar donated helps bring hope and healing to the patients and families we care for here in Springfield. As the Shriners Children’s healthcare system celebrates its 100th anniversary, your greatness is needed more than ever. Your continued investment will enable us to provide the most amazing care anywhere for another hundred years and beyond. Thank you for your continued support and generosity. “It’s been said that greatness is not what you have, it’s what you give.”

Stacey Perlmutter Director of Donor Development

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516 Carew Street Springfield, MA 01104-2396

ShrinersNewEngland.org

Your gift makes a difference!!

Shriners Children’s is a world-renowned health care system with 22 locations in three countries. 65 percent of the care provided in Springfield, Mass. is made possible by your generous contributions. Shriners Children’s is a 501(c)(3) nonprofit organization and relies on the generosity of donors. All donations are tax deductible to the fullest extent permitted by law.

Please consider making a tax-deductible gift today.

For more information on how you can help a child, please contact Shriners Children’s New England Donor Development Office at 413.735.1285 .

© 2022 SHRINERS CHILDREN’S TM

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