Patients & Families Family Advisory Council Members

Ronny V. Bachrach

• Member since: 2024
• Experience/areas of interest: Rheumatology, Pulmonology, Infusion Center, Nephrology, Inpatient Care, Poly Pharmacy (managing multiple medications and pharmacies), Ophthalmology, Outpatient visits, Immunology, rare diseases, autoinflammatory diseases, immune suppression, radiology/imaging

Ronny is mom to Sam (born in 2018). Before her second birthday, Sam was diagnosed with a rare form of systemic arthritis called systemic juvenile idiopathic arthritis (SJIA). Since diagnosis in 2020, Sam has had multiple inpatient stays and was subsequently diagnosed with a secondary diagnosis of Interstitial lung disease (ILD). Due to the complicated nature of treating a systemic rare disease with multiple medications, she is followed by multiple specialty clinics within Boston Children’s. She routinely sees rheumatology, pulmonology, nephrology, and ophthalmology, among others.

Since Sam’s longest inpatient stay of two months in 2021, Ronny has been interested in opportunities to try to both improve hospital services and help other parents within the hospital system. Currently, Sam receives most of her Boston Children’s care at the Waltham location, including monthly trips to see her favorite nurses at the infusion center.

Ronny, as a type 1 diabetic and as a mom to Sam, is passionate about improving experiences for patients and families. She joined the Family Advisory Council to represent her family and others by bringing personal experiences into improvement efforts in partnership with Boston Children’s. Ronny also serves on the Emergency Department FAC and as an E-Advisor.

Katie Baker

• Member since: 2019
• Experience/areas of interest: tracheobronchomalacia, airway stents, endocrinology, common variable immune deficiency, CAT/CR, IVIG, neurology, neuro-opthamology, neuroimmunology, hemicrania continua, intracranial hypertension, feeding/swallowing disorders, hematology, genetics, allergy, G-Tube

Katie lives in Boston with her husband, Rick, and son Jack. Following his birth in 2015, Jack was admitted frequently to another Boston hospital for respiratory illness. In 2017, without answers as to why Jack’s health was so poor, Katie and Rick brought Jack to Boston Children’s, where they found out that Jack had been born with several airway abnormalities. Since then, Jack has had many surgeries to fix parts of his airway and his lung. Jack also receives care for neurology challenges and has an immune deficiency that brings him to Boston Children’s for monthly treatment.

Katie serves on the FAC because she wants to leverage her experiences at Boston Children’s Hospital and elsewhere to help improve aspects of the patient and family experience for others. Katie sees this as her opportunity to give back to a hospital that has been life changing for her family. Since joining the FAC in 2019, Katie has taken part in many projects that have had direct impacts on the care that Jack and other patients receive at Boston Children’s. This is something that Katie finds incredibly rewarding. She also serves on the Emergency Department FAC and E-Advisors Program.

Jackey Bennett

• Member since: 2021
• Experience/areas of interest: pediatric nephrology, endocrinology, genetics, nephrotic syndrome, chronic kidney disease, autism, neurodiversity, non-speaking patient advocacy, CAT/CR, creating a sensory friendly environment

Jackey is mom to Keith (born 2016), who has two rare diseases: nephrotic syndrome, a protein-spilling kidney disease, and Chromosome 15q11.2-13.1 duplication syndrome (Dup15q), a genetic abnormality causing autism and intellectual disability. Keith is followed by the Boston Children’s renal team and spent much of 2019 and 2020 either inpatient or visiting the hospital for frequent infusions. Keith is also followed by Genetics as more is learned about his 15th chromosome duplication.

The Bennetts are grateful for the wonderful care Keith receives at Boston Children’s. Keith has been able to have some fun experiences at the hospital, including making gingerbread houses with Rob Gronkowski, visiting Santa, and a fourth birthday party from the CAT/CR nurses.

Jackey joined the Family Advisory Council because she has a passion for advocacy and an immense appreciation for the staff at Boston Children’s and their efforts to create a positive healing environment. She aims to give back by serving as a voice for families of children with unique sensory and communication needs in conversations about improvement efforts across the hospital. Jackey also wishes to empower parents to access the services their children need, through partnership with Boston Children’s staff who provide care and comfort to patients and families, in order to create a positive and trauma-free experience for their kids.

Jackey; her husband, Tony; and son Keith live in Windham, N.H.

• Read about Jackey and her family

Tiffany Benson

• Member since: 2024
• Experience/areas of interest: Primary care, sports medicine, Emergency Department, Female Athlete Program, dentistry, radiology, cardiology

Tiffany brings a wealth of diverse experience to the Family Advisory Council (FAC) from her time navigating several departments at Boston Children's Hospital. Raised in Boston, Tiffany is deeply committed to giving back to her community, particularly through nonprofit initiatives that focus on the needs of children and support for caregivers.

With a bachelor’s of science degree in business management and a concentration in trauma studies from Endicott College in Beverly, Mass., Tiffany has a strong background in organizational strategy and problem-solving. Her professional focus aligns with her personal commitment to advocate for families navigating complex healthcare systems. As a proud mom of a 16-year-old daughter and a 12-year-old son, Tiffany understands firsthand the challenges families face when it comes to pediatric care. Having been a patient at Boston Children’s as a child, Tiffany now navigates similar experiences with her children, fueling her passion for ensuring families are empowered and supported throughout their healthcare journeys.

Tiffany is a dedicated advocate for family engagement and believes in the transformative power of the parent voice. She is actively involved in several community organizations, including the Compass Working Capital Program Committee, where she works to enhance economic mobility for families, and as a strategic planning consultant with Alray Scholars. Additionally, Tiffany is a Jeramiah Program Fellow, working toward breaking the cycle of poverty for young mothers. Through her work on the FAC, Tiffany aims to use her experience as a parent, advocate, and community member to improve the experience of all families receiving care at Boston Children’s Hospital.

Lisa Cleary

• Member since: 2021
• Experience/areas of interest: pediatric oncology/neuroblastoma, bone lesions, hematopoietic bone marrow transplants, endocrinology, allergy, dermatology, MIBG/CT/MRI/z-ray, neurology/developmental delays, urology, ophthalmology, orthopedic, cardiology/EKG/Lipid clinic, audiology/otolaryngology, in/outpatient surgery, home care, central line care, long-term inpatient stays

Lisa Cleary lives in Franklin with her husband, Greg, and her two boys, Jack and Nicholas. In April 2015, 22-month-old Nicholas was diagnosed with stage 4 high-risk neuroblastoma. He immediately started his treatment on the oncology unit at Boston Children’s Hospital, in conjunction with the Jimmy Fund Clinic. Nick has been in remission since 2016 and is thriving. He is followed by multiple specialists at Children’s to manage side effects and other medical issues. In 2017, Jack, then 7, was diagnosed with a bone cyst after breaking his wrist. He is doing great after several procedures, under the care of the Orthopedic Specialists. Lisa felt humbled by the overwhelming support from the staff since day one, and found comfort in how much the care providers valued parental opinions and feedback.

Since 2015, Lisa has connected with and advocated for many families whose children are battling cancer. She has also been involved with several fundraisers and awareness projects for Boston Children’s Hospital, her favorite being Moms on a Mission, co-founded by Lisa and other “momcologists” whom she met during their children’s treatment. Lisa joined the Family Advisory Council as a way to give back to the organization that not only saved her son, but helped her family cope during their darkest days.

Melissa Crimmins

• Member since: 2025
• Experience/areas of interest: Urology, nephrology, chronic conditions, radiology/imaging, NICU, non-local inpatient care and outpatient visits, child life services, pediatric health communication

Melissa is the mother of four children, three of whom were born in the U.K. In her first pregnancy, the anatomy scan revealed possibly nonviable renal system anomalies. However, her daughter survived and even thrived, undergoing her first surgery at 3 days old. When she turned 5 and in the midst of the family's permanent move back to the U.S., her condition seemed to be declining, and Melissa sought a virtual second opinion from Boston Children’s. As the situation worsened, a trip to Boston Children’s for special diagnostics resulted in an emergency surgery and unplanned inpatient stay, the first step in getting her daughter back on track. The following year, the family traveled to Boston again for major surgery. This experience was life-changing. Given the difficulty, it is remarkable that Melissa’s daughter remembers it with happiness, which Melissa credits to the wonderful teams and facilities at Boston Children’s bringing the best out of her, physically and mentally. Today, her daughter's urological care remains at Boston Children’s, a hybrid of virtual visits and travel for in-person appointments. Melissa is grateful for the way the team has patiently valued her perspective, earned her trust, and helped the whole family through the most difficult times.

Melissa lives in Virginia with her husband and children. She is a member of the Boston Children’s E-Advisors Program and NHS Patient Experience Team in the U.K. She joined the FAC out of deep appreciation for the world-class care her daughter has received and hopes to support Boston Children's in helping patients and families, near and far, on their journeys.

Alisha Durant

• Member since: 2022
• Experience/areas of interest: autism, Ehlers-Danlos syndrome, Opthalmology, Blue Cone Monochromacy, Metabolism Program, Psychiatry, Rheumatology and Neuro Immunology, homeschooling

Alisha is mom to four amazing boys, all of who have received care at Boston Children’s. Alisha’s eldest son often needed care for illnesses as a young child. Her three younger boys have Ehlers-Danlos syndrome, a condition that effects their connective tissues, and autism. Alisha’s youngest two sons have retinal disease, and one of the boys has bipolar disorder, OCD, and additional challenges. Homeschooling plays a big part in this family’s life and how Alisha navigates the boys’ medical needs.

Alisha has years of experience coordinating the complicated care her sons need at multiple hospitals and medical practices. As the list of medical specialties supporting her sons continued to grow and their needs became more complex, she decided to bring her sons’ care under the umbrella of Boston Children’s.

Alisha joined the Family Advisory Council to represent her family and others in conversations that will impact Boston Children’s efforts to improve care experiences across the hospital.

Steve Favulli

• Member since: 2019
• Experience/areas of interest: congenital hypothyroidism, managing chronic conditions, Milagros Para Ninos, transition of patients returning to school after extended absence

Steve is the proud father of four wonderful children. He and his wife. Lauren, consider themselves incredibly fortunate to have had the opportunity to bring their oldest son to Boston Children’s Hospital when he was diagnosed with congenital hypothyroidism at just 5 days old. As new parents, they were anxious and unaware of what this would mean for their baby boy and their family, but knew that the best place to support him moving forward was Boston Children’s Hospital. At their first meeting in the Endocrine Clinic, Steve and Lauren were overwhelmed with the compassion and support of their son’s care team. The time spent educating Steve and Lauren, reassuring them as new parents, and simply listening to their questions and thoughts is something that they haven’t forgotten.

Steve’s position on the FAC is one that represents his family’s appreciation for Boston Children’s and all that the hospital provides to families. At the same time, it is a way for his and Lauren’s passion for Boston Children’s to be shared with others.

Kevin Flynn

• Member since: 2023
• Experience/areas of interest: cerebral palsy, neurology, infectious diseases, orthopedics, audiology, deaf-blind, complex care, durable medical equipment, augmentative communication, cortical visual impairment

Kevin and his wife, Katie, live in Boston with their two daughters, Tessa and Molly. Their introduction to Boston Children’s Hospital came after Molly was exposed to a virus in utero called CMV, which subsequently resulted in global developmental delay, a cerebral palsy diagnosis, epilepsy, and a level of dual sensory loss that qualifies as deaf-blind. Molly spent 78 days of her first year at Boston Children’s with appointments in dozens of departments. Thanks to her exceptional care at Boston Children’s, Molly is the happiest and sweetest 5-year-old. She is surrounded by love and world-class care at her hospital and her school, the Perkins School for the Blind.

Kevin has been an E-Advisor at Boston Children’s and is thrilled to serve on the Family Advisory Council to help ensure as many families as possible can access the exceptional care his family.

Amanda Voss Gannaway

• Member since: 2024
• Experience/areas of interest: Genetics, neurology, allergy/immunology, developmental medicine, augmentative and alternative communication (AAC), therapeutic services (OT/PT), rare genetic disorders, developmental disabilities, epilepsy, food allergies

Amanda is the mother of two young children who are treated at Boston Children’s Hospital for a combination of both rare and common medical conditions, ranging from a little known de novo genetic disorder to asthma. Her family’s relationship with Boston Children’s began when her older son was referred to the NICU GraDs program. The diagnosis of a rare genetic disorder associated with global developmental delay and hyperphagia soon followed. Her son currently sees specialists across six departments and has received many different types and levels of care at Boston Children’s. Rather than causing him to fear the hospital, the breadth of his experience has led him to develop a strong affinity for it, a testament to the warmth and expertise of the people who work there. Amanda’s younger son is a regular patient in some of the same departments as his older brother and has also spent time at Boston Children’s for various procedures and inpatient stays.

A graduate of the Boston Children’s LEND Fellowship program, Amanda is passionate about improving healthcare for children with developmental disabilities. She joined the Family Advisory Council in gratitude to the providers who have improved the quality of her children’s lives and to support efforts to ensure that a high level of care remains accessible to all patients.

Andrea Johnston

• Member since: 2024
• Experience/areas of interest: Vascular anomalies, complex care, g-tube, tracheostomy, intensive care unit stays, interventional radiology, telehealth, family housing

Andrea's son has been receiving care at Boston Children's since 2010 within the Vascular Anomalies Center. She and her family live in New York City and make the trip to Boston for all of her son's treatments. Andrea comes to the Boston Children’s FAC as a passionate advocate with experience sitting on several American Academy of Pediatrics committees, being the co-facilitator of the family advisory council at Kravis Children's Hospital in New York City and being a parent consultant for a national video project by the Parenting Center. She is proud to be one of the co-authors of the textbook chapter entitled “Patient and Family-Centered Care and the Patient Centered Medical Home” in the 24th edition of Rudolph’s Pediatrics. Andrea is thrilled to have the opportunity to collaborate with fellow parent advisors at Boston Children’s.

Amanda Lane

• Member since: 2023
• Experience/areas of interest: trauma, foster care, adoption, transracial families, behavioral health, in-hospital Behavior Support Plan, reactive attachment disorder, ADHD, anxiety, depression, cerebral palsy, laryngeal cleft, psychology, TF-CBT (trauma-focused cognitive behavior therapy), neurology, constipation, early intervention, IEP, mild diagnoses, mandated reporting, legal process

Amanda is the proud mother of two children. She and her husband began the process of becoming licensed foster parents in 2014. Their first emergency placement completely changed the trajectory of their lives. Amanda quickly transitioned from working full-time to being a stay-at-home parent of a medically complex child for the next six years. His adoption was finalized roughly a year and a half into the process, after which Amanda and her husband welcomed a compassionate, loving 8-year-old girl into their family, who they also adopted. Together their family has tackled numerous therapies, including TF-CBT (trauma-focused cognitive behavior therapy). Both children have regular contact with their biological families — a connection she and her husband eagerly support.

Amanda is aware of the complex challenges parents and guardians may face while raising children who have experienced significant trauma. She is especially passionate about supporting other foster and adoptive families, centering adoptee voices, honoring birth family connections and culture, the importance of quality behavioral health, and the intersection of faith and advocacy. She and her family live north of Boston and are incredibly grateful for their care team at Boston Children’s.

Jinah Lee

• Member since: 2022
• Experience/areas of interest: intensive care unit, inpatient care, experimental therapeutics unit (clinical trial unit), psychiatry, chronic fatigue, sleep apnea, complex chronic illness, autism spectrum, vascular anomalies, increasing awareness about special needs through education

Jinah is the mother of two boys, Noah (born 2000) and Isaac (born 2004). Isaac, born with his medical condition, was called “an enigma” by his doctors in Australia, who later named his condition PUVA — previously unnamed vascular anomaly.

In 2015, Jinah and her family relocated from Melbourne, Australia, to the Boston area so that Isaac could receive care through the Boston Children’s Vascular Anomalies Center. At age 15, after many tests over a number of years, Isaac was diagnosed by his Boston Children’s team with PROS — Pik3ca overgrowth spectrum, a genetic mutation that is a major part of his healthcare.

Jinah, who spends much of her time managing Isaac’s medical care and education, joined the Family Advisory Council as a way to give back. As a family advisor, Jinah shares her thoughts, feedback, and pieces of her family’s journey so that they can be woven into improvements here at Boston Children’s.

Esterlina MacInnes

• Member since: 2017
• Experience/areas of interest: integration care, kidney disorders, G-tube, feeding/swallowing difficulties, vision impairment, speech/AAC, home care nursing, complex care

Esterlina is a mother of a young son named Ian. At 4 months old, he was diagnosed with Lowe syndrome, a rare genetic condition that affects the eyes, the kidneys, and the brain. Since her son’s first surgery at 5 weeks, Esterlina has spent countless hours navigating Boston Children’s Hospital, including inpatient, ambulatory, and ER, as well as therapy services. She is grateful for the excellent attention and care she and her son have received at Boston Children’s.

As a result of her journey with her son, Esterlina decided to embark on a new career helping families going through similar circumstances. To complement her personal experience, in 2016, she completed the Leadership Education in Neurodevelopmental and other Disabilities (LEND) Program at Boston Children’s. This is a multidisciplinary, family centered fellowship that covers health and cultural issues related to disabilities, public resources, and policy initiatives. In 2017, Esterlina joined Boston Children’s as an employee, taking on the role of Family Partnerships Coordinator, concentrating her work on developing projects to support and empower Latino patient families who receive care here at the hospital.

Esterlina lives with her husband and son in Medford, Mass., where she advocates for her family within the education system, as well as community and social activities. But, especially, she continues coordinating the care of her son’s complex health condition.

• Read about Esterlina and her family

Ali Mahady

• Member since: 2023
• Experience/areas of interest: rare diseases, cortical visual impairment, epilepsy, complex medical conditions, genetics, undiagnosed genetic diseases, endocrinology, ENT, AAC, developmental delays, feeding and swallowing disorders, physical therapy, occupational therapy, speech therapy, feeding therapy

Ali is the mother to a 4-year-old boy, Weston. Weston was born with a rare genetic disease that came with epilepsy, cortical visual impairment, brain abnormalities, hypothyroidism, and global delays, as well as two other rare conditions and many other abnormalities and medical issues. To date, Weston is the only one in the world with his condition, and there have not been overarching diagnoses found for him. Ali has spent the last four years navigating the coordination of care and various applicable state resources for her medically complex son. Weston is followed by about 20 departments at Boston Children’s Hospital, all of which provide him excellent care and help him to thrive. Weston is also in several research studies, including the Undiagnosed Diseases Network, to which Boston Children’s Hospital referred him. Ali and her husband are beyond thankful for the excellent care Weston receives at Boston Children’s Hospital.

Ali joined the Family Advisory Council to give back to the hospital that has done so much for her family. She also looks forward to helping other families on their journey at Boston Children’s and hopes to make the process easier for them. Ali is honored to be able to give back to the hospital by serving on the Family Advisory Council. Ali and her husband, Patrick, live with Weston outside of Boston.

Erin Poirier (parent co-chair)

• Member since: 2019
• Experience/areas of interest: rare genetic conditions, autism, assistance with non-verbal communication, epilepsy

Erin Poirier is a wife and mother of two daughters, Lily and Elise. At very young ages, both girls presented with developmental delays, physical delays, and epilepsy, and were also non-verbal. For many years Lily and Elise were considered “mysteries” to their team in the Neurology Department at Boston Children’s. After 6½ years of searching, both girls were diagnosed with a rare genetic condition called SYNGAP1. Currently, Lily and Elise are two out of 250 individuals in the world with this diagnosis and only the second known sibling set. Erin and her husband, Andrew, are grateful for both the expertise and persistence of their Boston Children’s team for finding the answer to their question of “why?”

Erin joined the Family Advisory Council as a way to help other families on their journey at Boston Children’s and to have a voice in a place that matters most to her family.

• Read about Erin

Padmaja Raman

• Member since: 2020
• Experience/areas of interest: complex care, managing a home “ICU” setting, IEP for cognitively fine physically disabled children, coordination between physicians, specialty drug, insurance, infusion, respiratory, enteral, home care

As a mother to a complex care child with an orphan disease called infantile pompe, Padmaja has been in immersed in complex care and related issues for over a decade. For her, the lobby of Boston Children’s is the "lobby of hope." It is truly humbling to see the depth of skills, dedication, and commitment of the physicians and staff to help children with various disorders. Seeing this "mission"-driven work is what motivates Padmaja to volunteer at Boston Children’s.

Padmaja and her family experienced a steep learning curve as one of the first patients at Boston Children’s dealing with an orphan disease that was administered a life-saving therapy under clinical trials. The drug has since been FDA approved and continues to be administered through infusion.

The outstanding and continuing support of various physicians and staff has helped Padmaja’s family to navigate this unique journey.

Yolanda Ramos

• Member since: 2025
• Experience/areas of interest: Fibro-adipose vascular anomaly (FAVA), venous malformation, Von Willebrand disease, hematology, inherited disorders

Yolanda is a proud mother of A.J., born in 2013 and Esme, born in 2016. At just 3 years old, Esme was diagnosed with a venous malformation, affecting her mobility. A.J. and Esme both live with Von Willebrand disease. Navigating these challenges has deepened Yolanda’s passion for advocacy and family-centered care. Her connection to Boston Children’s Hospital runs deep, not just as a parent but as a former patient. As a teenager, Yolanda faced complex medical issues and received life-changing care from the hospital. That experience shaped her lifelong belief in the power of compassionate, high-quality healthcare. In 2025, she joined the Family Advisory Council to represent families like hers, ensuring that parents and caregivers have a voice in shaping hospital experiences. Yolanda’s work extends beyond her own family; she is a dedicated advocate and leader in mental health, early childhood development, and community engagement. At home, Yolanda cherishes movie nights, traveling, and spending time outdoors with her family. She lives with her husband, their two children, and their beloved dog, Kodi, outside of Worcester.

Suzanne Roma

• Member since: 2022
• Experience/areas of interest: Stroke, Hemiplegia, Botox, CIMT, Orthopedics/Physiatry, Stroke and Cerebrovascular Center, NICU, Neurology, Physical/Occupational Therapy, Boston O&P (orthotics/bracing), Opthalmology, Early Intervention, transition to public school, and coordination of care

Suzanne lives in Boston's Metrowest with her husband and their two children. Her son is a perinatal stroke survivor who has been followed by his team at Boston Children’s Hospital since he was just a few days old. Suzanne and her family have a very deep appreciation for their son’s care team who have consistently and compassionately worked together, even across medical specialties, to allow him to thrive.

Finding a way to give back to Boston Children’s Hospital is an important piece of the journey for Suzanne. She has spoken at the Stroke and Cerebrovascular Center’s family day to share her son’s experiences with other families of stroke survivors. As a FAC member, Suzanne is excited by the opportunity to work with other family advisors and hospital staff to improve care experiences for patients and families who come to Boston Children’s. Suzanne is also a member of the hospital’s E-advisors Program. On the weekends she enjoys being with her family, outdoor adventures, fixing up the family's old farmhouse, and traveling.

Maria Alice Melo de los Santos

• Membro desde: 2022
• Experiência/areas de interesse: Atenção Primária, Centro de Cuidados do Cérebro, Genética, Centro de Autismo, Pronto-Socorro, Alergia e Imunologia, Cardiologia, Odontologia e cuidado de criança com situação médica complexa.

Maria Alice reside em Worcester, MA com seu marido, seu filho, Benjamin, e sua filha, Catherine, ambos os filhos são pacientes do Hospital Infantil de Boston. O filho mais velho de Maria Alice, Benjamin, recebe o maior e o mais especializado cuidado, pois nasceu com uma rara Síndrome Genética causada pela alteração do cromossomo 11q23-q25. Ben é paciente do Hospital Infantil de Boston desde 2016, quando tinha apenas 1 ano e 8 meses de idade. Maria Alice e sua família se mudaram do Brasil ao Estados Unidos, para que Ben recebesse os cuidados dos 10 especialistas que continuam cuidando dele. Como o idioma que falam é o português, a equipe do Boston Children's Interpreter Services (Serviços de Intérpretes do Boston Children Hospital) desempenhou um papel fundamental no apoio a Maria Alice e sua família no acesso a cuidados médicos para seus filhos.

Maria Alice e sua família são imensamente gratos por TODOS os cuidados, desde cirurgias, a serviços de emergência, até cuidados de rotina, serviços de interpretação e tradução que receberam ao longo do caminho. Maria Alice sente uma grande satisfação e alegria em fazer parte da FAC (Conselho Consultivo da Família), e conhecer a fundo o trabalho desenvolvido com muito amor e empenho por todos os colaboradores do Boston Children's Hospital, e poder compartilhá-lo com sua comunidade. Ela sente que é o mínimo que pode fazer, para retribuir todo o cuidado que este maravilhoso hospital, fez e continua a fazer por sua família. Obrigada.

• Member since: 2022
• Experience/areas of interest: Primary Care, Brain Center, Genetics, Autism Spectrum Center, Emergency Department, Allergy and Immunology, Cardiology, Dentistry, and caring for a medically complex child

Maria Alice lives in Worcester, Mass., with her husband, their son, Benjamin, and their daughter, Catherine, who are both Boston Children's Hospital patients. Maria Alice’s eldest child, Benjamin, receives the greatest and most specialized care, as he was born with a rare genetic syndrome caused by the alteration of Chromosome 11q23-q25. Ben has been a patient at Boston Children's Hospital since 2016 when he was just 1 year, 8 months old. Maria Alice and her family moved from Brazil for Ben to receive care from the 10 specialties who continue to care for him. As Portuguese speakers, the Boston Children’s Interpreter Services team has played a critical role in supporting Maria Alice and her family as they access medical care for their children.

Maria Alice and her family are immensely grateful for ALL the care, from surgeries to emergency services to routine care to interpretation and translation services, that they have received along the way. Maria Alice feels great satisfaction and joy to be part of the FAC, to know in depth the work developed with much love and commitment by all the employees of Boston Children's Hospital and to be able to share it with her community. She feels that it’s the least she can do to repay all the care that this wonderful hospital has done and continues to do for her family.

Margot Schwartz

• Member since: 2023
• Experience/areas of interest: Craniofacial conditions, surgery, NICU, hearing loss, complex airways, sleep apnea, feeding/G-tube, patient safety, caregiver mental health.

Margot and her amazing daughter Maya both have bilateral craniofacial microsomia. Maya was diagnosed when Margot was 20 weeks pregnant and their family’s journey at Boston Children’s began through the Fetal Care and Surgery Center. Since then, Maya had a three-month hospital stay at birth, multiple surgeries and complications, and spent plenty of time at Children’s in both inpatient and outpatient settings. Margot joined the Family Advisory Council to improve the experience for families navigating the challenges and joys of medically complex children. She also developed severe PTSD as a caregiver and seeks to help others prevent and manage caregiver mental health hurdles.

Margot lives in Brookline with her husband, Glen, Maya, and their dog, Fletcher. They are grateful to live within walking distance of the wonderful team at Children’s. Margot previously volunteered on the Beth Israel Deaconess NICU Family Advisory Council, and as a member of the Consumer Quality Council at Health Care For All. She enjoys collaborating with patients, families, and providers to improve the quality of care, and looks forward to doing so as a member of the BCH Family Advisory Council.

Molly Urban

• Member since: 2025
• Experience/areas of interest: Rare genetic diseases, metabolism, epilepsy/infantile spasms, ketogenic diet, cortical vision impairment, developmental delays, PT/OT, speech/AAC, G-tube, complex care, palliative care, nursing care

Molly lives south of Boston with her husband, Joe, and sons, Jack and Ben. Jack was diagnosed with a rare genetic disease, non-ketotic hyperglycinemia (NKH), at 2.5 months old after an uncomplicated pregnancy. When Jack was 2 months old, Molly and Joe knew something was wrong but it took weeks (and misdiagnoses) for their concerns to be taken seriously. On Labor Day weekend in 2021 a team of wonderful Boston Children's neurologists finally diagnosed Jack with infantile spasms caused by NKH. Although this was not the news they wanted, the team at BCH took incredible care of Jack and his family and when it was time for discharge they had a plan, they had support and they actually felt hopeful. Since then, Jack has received amazing care both inpatient and outpatient at BCH. Molly and Joe are forever grateful to all the wonderful BCH employees on "Jack's Team" and know without them Jack would not be the silly, smart, joyful boy that he is.

Molly joined the FAC to give back to the institution that has given her son and family so much and to hopefully be a part of efforts that make being in the hospital, whether it be for something big or small, easier on all patients and families in the future.

Maria Valencia-Devin

• Member since: 2024
• Experience/areas of interest: Chronic kidney disease, end-stage kidney disease, renal transplant therapy, transplantation, post-transplantation, peritoneal dialysis, intermitted hemodialysis, G-tube nutrition, and critical care assistance. Instructional design, learning experience, design, technical training, learning, and development. Education program support and coordination.

Maria Valencia-Devin gave birth to Simon in 2013. Simon was born with polycystic kidney failure and received a transplant 18 months later.

Maria's goal is to recognize families making a difference in the lives of children with chronic illnesses. Through her work as an MVP Mom at Team Impact and Transplant Research, she is raising awareness and sharing her experience of the transplant lifestyle with others. Her dedication to helping others is truly a form of gratitude, and her efforts are to share the light throughout the transplant journey.

Maria lives with Simon, and they love traveling and exploring new places. They believe that traveling is a great way to learn and grow. Simon has been a part of the Northeastern men's hockey team for a few years, and has earned immense love and respect from players and coaches. Being a part of the hockey team has been a wonderful experience for the whole family. It has enriched their lives and brought them immense joy.