Naomie and Delicia's Story
On May 23rd, 2021 my friend, Jane, reached out to me about conjoined twins she found out while she was visiting a local hospital. The twins’ family was without any help or hope for their future treatments. My friend asked if I would help. When I saw the pictures of the two babies in need of urgent care, I could not say “NO.” So many times people with critical health conditions have reached out to me to help them, but I had to say no. My plate was full with taking care of Leo’s needs and treatments, as well as with other responsibilities. I didn’t have an organization that could support them. However, the pictures of the twins could not get out of my mind. It was on a Sunday night when I sat down on my couch and prayed, “Lord, help me what to do.”
That is always my shortest prayer in time of need. Immediately, I got an idea of reaching out to Leo’s surgeon at Shriners, Dr. Ehrlichman, who is a good friend of ours. Shriners was unable to help the twins, but Dr. Ehrlichman connected me to his other doctor colleagues from Mass General Hospital (MGH) in Boston. When MGH received the medical records of the twins, they agreed to treat them for free. I couldn’t believe it. MGH is one of the best hospitals in the country and world.
"It was on a Sunday night when I sat down on my couch and prayed, “Lord, help me what to do.”
MGH told me if I could bring them here and take care of their other needs, they would provide free care. I had to figure out how to get them here. We needed enough funding to bring them here and provide for their needs such as air tickets, visas, housing, medications and so on. I didn’t know exactly what I was going to do. I reached out to a couple friends, and they helped me start and manage a GoFundMe page. We set up a goal of $30K. Some people doubted that we would be able to raise such an amount. I felt uncomfortable about reaching out to friends through emails, text messages and Facebook to donate. A friend of mine told me: “This is not about you; you are doing this for the twins – not for yourself.” Within two weeks, we were able to raise the funds we needed. Everyone was so amazed.
When the family of the twins went to apply for a visa at the US embassy in Burundi, their visas were denied. It was very shocking. We didn’t know exactly why. The babies needed treatment only, not stay in the States. We finally got a lawyer to do pro bono work to apply for a humanitarian parole visa for the twins from the United States Citizenship and Immigration Services (USCIS). We also received support from Senator Ed Markey’s office. Unfortunately, the twins died from malaria and other health complications before they came to the States for treatment. When I heard about the death of the twins, I lost all my energy. I felt like I didn’t want to do this anymore. My friends reached out to comfort me and encouraged me not to give up and to continue doing the good work. I felt supported – really. After regaining some strength, I emailed the MGH doctors and staff to thank them for the free care they wanted to provide to the twins. A couple minutes later, I received two emails, one from Dr. Goldstein (Surgeon-in-Chief of Pediatric Surgery at MGH and Director of Pediatric Neurogastroenterology Program) and another one from Dr. Kleinman (Physician-in-Chief at MGH and Professor at Harvard Medical School), saying they were impressed by my efforts and commitment to help the twins and that they are both willing to partner with me to help other families. Dr. Ehrlichman confirmed it, too. I was sitting on a chair when I read their emails, I immediately jumped and shouted, “YES, YES, YES.” My spirit was revived again. I was so glad to have this opportunity to collaborate with MGH to change many lives.
"My friends reached out to comfort me and encouraged me not to give up and to continue doing the good work. I felt supported – really."
Since the time when I started to help Freddy, the first burn survivor, and then Leo, I have been thinking of starting an organization that could provide access to healthcare for underserved patients with severe diseases, especially children, who cannot be treated in their home countries due to limited resources and medical technology. However, I didn’t know how I could put this into action. While I was helping the conjoined twins, I realized that it is hard to do this work by myself. I decided to start a nonprofit organization. With the help of Harbor Compliance, a company that offers help to new nonprofits, and a friend of mine, Sandra, I launched Justice Health Initiative, Inc. (JHI). On November 29, 2021, our 501(c)(3) application was approved and JHI is now registered as an official 501(c)(3) organization with the IRS. This is great news! JHI’s EIN Number is 87-2009027.