Support JoJo's Education Fund's Fundraising Page

Our Story

On July 7, 2007, my husband Sam and I welcomed with joy the birth of our seconddaughter Josephine (JoJo). Soon afterwards we were heartbroken to learn thatshe had a serious brain disorder called early myoclonic encephalopathy.Although she received the best possible medical care and treatment, the outlookfor JoJo was bleak. With support from the Pediatric Advanced Care Team (PACT)at Dana-Farber Cancer Institute and the Beth Israel NICU Team, we took our babyhome. The first thing we did was take our two girls for a picnic under a treeup at Larz Anderson Park (pictured). We were given three wonderful days withour baby. JoJo died on the third night, painlessly and peacefully, in my arms,with her dad and I singing her a lullaby. We are raising money for pediatricpalliative care. It is our deepest hope that when people are faced withheartbreaking medical decisions about a loved one, they will receive the samesupport as we did.

Thank you so much for your support!

With Love,
Kha and Sam

How we support Dana-Farber

When we learned of JoJo's condition, we knew what we wanted to do forour daughter, but we were afraid of how to go about making it happen. Therewere so many questions and assumptions on our part. We knew that we wanted totake her home so that she could sleep in her own crib and for us to be togetheras a whole family, under the same roof. However, we thought that if she passedaway at home, would our home be a constant, heartbreaking reminder that ourbaby died there? What about Samantha? She was almost two years old when JoJowas born. Would she be confused about her baby sister being present one day andgone the next? We wanted to protect both our girls but how? To help answer ourquestions, the PACT team was brought in to help guide us through our journey.They listened to our questions and thoughts never once judging us. They askedthoughtful questions and gave us facts; essentially tools that would help usmake the decisions that we made. Thanks to them, we were sure that bringingJoJo home was the right thing to do for her and our family. Even though hertime home with us was brief, we had the opportunity to be a family, away fromthe hospital and tubes. Samantha doesn't remember her time with her babysister, but she will always know that she was included in the journey from whenJoJo was born to when she kissed her sister goodbye at the crematory. Sam and Iwill forever be grateful to the PACT team. Thanks to them, we have no regretsin the decisions we made regarding our daughters and that is one of the mostprecious gift anyone has given us.

The Pediatric Advanced Care Team (PACT) at Dana-Farber/Boston Children'sCancer and Blood Disorders Center is a team of interdisciplinary clinicianswith expertise in providing palliative care for children with seriousillnesses. The team is comprised of physicians, a nurse practitioner, and asocial worker who work together to ease pain, manage symptoms and side effects,foster communication between families and health care providers, and coordinateservices. Spiritual care is also available. By bringing together clinicalinformation and a family's values, the PACT team supports families and helpsthem make the best health care decisions for their child.

Our family benefited from care provided by the PACT team, but many institutionsaround the world lack these critically important, humanitarian services. Tospread the practice of palliative care, JoJo's Education Fund supports scholarships to Dana-Farber's Palliative Care Education and Practice (PCEP) program, anintensive training course that provides clinicians with the skills to establishsimilar programs at their own institutions. Scholarships are awarded toclinicians from locations where there is little or no palliative care. Since its inception in 2011, JoJo's Education Fund has provided scholarship support to clinicians from all over the world.

Every year, we are invited to the PCEP graduation to meet the clinicians whohave benefitted from JoJo's Education Fund. It is a bittersweet time for us,but we couldn't be happier knowing that JoJo's legacy lives on. We sincerelyhope that these clinicians will be able to provide similar palliative care backin their communities that the PACT team gave us.

In 2018-2019, JoJo's Education Fund supported participants from two countries, including the following:

Ximena García, MD from Colombia and Maria Rachitski, MsRN from Russia

In 2017-2018, JoJo's Education Fund supported participants from the US, including the following:

Amanda Ruth Alladin, MBBS, Taryn J. Hamre, DNP, MS, BSN, and Raul Rodriguez, DO

In 2016-2017, JoJo's Education Fund supported one participant from the US:

Bridgett Ann Wekenborg, MSN 

In 2015-2016, JoJo's Education Fund supported participants from two countries, including the following:

In Turkey - Fatma Betul Cakir, MD, is a pediatric oncologist fromTurkey, where palliative care is an emerging discipline. Pediatric cancerpatients in her country must often undergo painful procedures such as bonemarrow aspirations without adequate anesthesia. To ease unnecessary pain, Dr.Cakir initiated a pilot anesthesia protocol for pediatric patients at a majorhospital in Istanbul. Over a three-year period, Dr. Cakir and a team ofanesthesiologists provided deep sedation (a type of anesthesia that reducesconsciousness but allows the patient to respond to verbal commands) to 111patients with cancer. Patients and their parents reported that the techniqueeliminated pain 75 percent of the time, and greatly reduced anxiety on the partof patients, parents, and physicians. Having demonstrated the benefits of deepsedation for pediatric patients, Dr. Cakir is working with the hospitaladministration to garner the resources required to maintain the program.

In Israel - Gadi Abebe Campino, MD, MHA, formed a dedicated palliativecare team at the largest children's hospital in Israel, which is committed tocaring for children of all backgrounds, including those from Palestine.Training and support through PCEP helped Dr. Campino to identify a small groupof internal advocates and form the team. This team, which consists of aphysician, nurse, and social worker, has begun to conduct outreach to gainpatient referrals. Dr. Campino is also leading training seminars for clinicalstaff within the hospital's Division of Hematologic Oncology, in addition todeveloping educational programming to bring together Palestinian and Israelimedical providers for networking and knowledge sharing. 

In 2013-2014, JoJo's Education Fund supported four participants from three countries, including the following:

In Uruguay - Dr. Mercedes Bernadá, a pediatrician at a 700 bed hospitalin Montevideo, Uruguay, led the first palliative care training in her country-anintensive, 2-month course to train 65 medical, nursing, and psychology studentsin the interdisciplinary model of care practiced at Dana-Farber. She and sixLatin American pediatricians launched an association to spread palliative carepractices throughout continent. "I will be eternally grateful for the possibility the JoJo Fundgave me." - Mercedes Bernadá, MD

In Mexico - Dr. Bertha Soria Garibay, a pediatrician at ABC MedicalCenter, a 200 bed hospital in Mexico City, is initiating a palliative caretraining program at her institution. Her experience with PCEP has given her theskills and motivation to surmount many of the obstacles that exist topalliative care in Mexico. "I did not have institutional economic support to attend PCEP. Myhusband helped to pay for the tuition, and with your help, I could makeit." -Bertha Soria Garibay, MD

In Australia - Dr. Martha Mherekumombe, a pediatrician at The Children'sHospital at Westmead, a 350 bed hospital in Sydney, has made significantadvances in clinical and educational programs at her institution, and hasenhanced symptom management skills. She is pioneering innovative ways toimprove end-of-life care for children in her native Zimbabwe. "I cannot thank youenough for this opportunity; there is much to be achieved to extend palliativecare around the world so that children can live and die in dignity." - Martha Mherekumombe,MBCHB