We wanted to share a story about an amazing family and the lengths they go to in order to support AJ’s goal of being able to walk again. The Quetta family has now travelled to Medellin, Columbia 3 times in the past 6 months, and we were fortunate enough to be able to travel with them this time. In Columbia AJ is able to receive 100 million stem cells from umbilical cords, bone marrow, and adipose tissue. He is receiving 4 stem cell treatments over an 8 month time span. He will be evaluated 6 months after his 4th treatment in May. AJ will have receive 400 million stem cells by the end of his 4th treatment. All of the cost associated with this trip are not covered by insurance. The airfare, hotel rooms, transportation, food and the stem cell treatments are all paid out of pocket.
Leaving for this trip, we met the Quetta family at Logan Airport at 5:00 am to head to Columbia. We all think of travel as stressful but the Quetta family just take travel in stride. We had an 8:00 am flight to Panama, which lasted 5 hours. When boarding a plane, AJ goes on first about 60 minutes before regular boarding. He is taken down the ramp and to the door of the plane. His chair has to be manually taken apart for travel and he is lifted into a small chair that will fit between the rows of the plane seats. He is then lifted into his seat for the trip. We did not realize there was so much to consider and so many challenges when flying with a disability until we accompanied AJ and his family on this journey. At the end of the long flight, the family patiently waits for everyone to get off the plane before carrying him off. This process starts again after a 6 hour layover in Panama. Finally at 7:00 pm we were on our way to Columbia. We arrived at the hotel after 10:00 pm, got settled, and went to be bed around 12:30 am.
Monday we got up at 6:00 am and we were at BioXcellerator by 7:00 am. AJ’s first appointment was a full evaluation with his doctor. The next step was to receive an IV with tons of oxygen and nutrients to support the stem cells. After this AJ went into his 3rd appointment, an hour in a hyperbaric chamber. This kid was amazing all day going, with no sleep from one appointment to the next. The next day was much of the same. The day started with the doctor taking blood from AJ and putting it into an IV bag. Once in the bag they mixed his blood with many nutrients as well as oxygen and then put it back into AJ’s body. Finally came the part we had been waiting for, the doctor removed 10 CC’s of fluid from AJ’s spine and replaced it with 100 million stem cells. The stem cells can take between 6 months and 1.5 years to work.
It is hard to explain if you have not experienced a trip with the Quetta family. AJ’s only source of independence is his electric wheelchair which he could not bring. In the 6 days with the family, AJ was lifted in and out of his chair probably 40 times. The trip started with AJ sitting in a plane seat for 7 hours. At the Doctors office he was pulled in and out of so many different rooms and treatments. AJ had a huge smile on his face every single morning when I walked into his room to get him ready. Every night we were able to help put him in bed and it was the same smile 15 hours later. Having dinners with the family and watching them interact was so incredible. We are truly blessed that to be able to go with the Quetta family.
Please keep AJ and his family in your thoughts and prayers through this process.
