Recently we have posted about Ostin, a baby with lymphatic malformation in the face, who has received an experimental drug called OK-432 from Japan. Yesterday, Emily traveled to San Pedro Sula with him to visit his doctor. He received an ultrasound and we are happy to report that since his first injection there has been a 60% improvement in his condition! His next injection will be Monday.
While in San Pedro Sula, Emily met with Peggy Kipps of the Ruth Paz Foundation and got to visit local hospitals and doctors. The Ruth Paz Foundation has been an extremely helpful partner to Esperanza over the years and has significantly expanded our medical network within Honduras.
Emily also met with Hector Fonseca MD, a pediatric cardiologist we trust and he gave her a cd of a child who needs to go to the US. We also have another serious heart case of a 7 month old that Emily is pursuing help from a heart brigade in San Pedro Sula, otherwise he will need to come to the US.
Other cases being worked on at the moment include a patient who lost his eye sight 6 years ago from a machete accident. He needs an evaluation and possibly a prosthetic eye like Vanessa. We also have a 10 year old needing surgery on his testicles as soon as possible and have the best surgeon in Honduras lined up if a brigade cannot do it next week.
Ana is currently working her tail off between helping Esperanza and a group from Michigan who is running medical clinics in Honduras. Once again it’s being shown how hard she works and how much we depend on her!
On a sadder note, Peggy has informed us that all but one of the people from the prison fire who were hospitalized in Tegucigalpa have died. The level of medical care is just so much worse compared to the US, but this also shows why we need to continue to work hard in Honduras.
Will continue to update as I receive more information from Emily and Tom.
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.