For the past several months, Esperanza has been working along with The Ruth Paz Foundation and others in advocating for two year old Nelly who had a huge tumor in her stomach. She was finally accepted for surgery in Virginia and traveled there with her mother. Today she underwent surgery and her little body began to fail….after heroic efforts medical personnel stabilized her and she was sent to PICU.
Sadly, Nelly passed away at 2:00 p.m. Our thoughts are with her heartbroken family. Rest in peace, baby Nelly.
This afternoon I received a text message from Peggy Kipps (Ruth Paz Foundation) that the long awaited drug (OK-432) has safely arrived from Japan. I was filled with both excitement and relief, and immediately called Ana (Hernandez) to share the news. Tom, Ana and I had been discussing this case last night because Ostin’s mother, Carla, had called to say Ostin was having more difficulty breathing. Tom was concerned that his fear Ostin would suffocate, was becoming a reality.
Ana, her sister, and a doctor from Flores went to Ostin’s house to share the news that help was on its way. The extended family gathered round, rejoicing in praise, for answered prayers.
Peggy is now in the process of coordinating with Dr. Lopez and the hospital administration for Ostin’s arrival. It is expected that he will be initially hospitalized for 4-5 days. His family anxiously awaits word for when they need to head to San Pedro Sula…and we will be there every step of the way. We are filled with gratitude that this little baby will have a chance at life.
Yesterday I received fantastic news from Mrs. Peggy Kipps of The Ruth Paz Foundation that the first step for obtaining life saving medicine for baby Ostin has been accomplished! Peggy gave the credit to her co-worker, Paola, who has been working tirelessly for the past several weeks with the foundation’s lawyers and goverment officials.
Ostin was born with a congenital malformation called a “lympangioma.” At birth it was only thumb size, but it grew at an alarming rate and doctors were concerned he would suffocate. Surgery was deemed too risky and the alternative treatment is to inject the area with a drug called “OK-432.” Unfortunately, it is not FDA approved in the U.S. and only available in Japan, South Korea and Taiwan.
The Honduran government has now agreed to allow the medication to be imported into their country, and the necessary permit will be provided to the drug company. This drug is very temperature sensitive and requires specific shipping requirements, and we anxiously await its safe arrival.
Thankfully, Ostin continues to hold his own and awaits at home with his worried family. Please hold Ostin in your thoughts and join us in waiting for hope.
Earlier this week, I received the medical information for Nelly Fernandez, from Mrs. Peggy Kipps, Executive Director of The Ruth Paz Foundation in San Pedro Sula, Honduras. Twenty-two month old Nelly suffers from “Fibromatosis Infantile” and is in URGENT need of help to remove the large tumor in her abdomen. And so the process begins of finding an interested doctor and hospital who will be able to provide medical care at a reduced amount, and an interested party in providing the financial support. Here’s hoping for a successful outcome.
Please keep little Nelly in your thoughts.