In January 2011, our daughter Josefina of 6 months old was diagnosed with severe progressive infantile scoliosis. We live in Montevideo, Uruguay; a country of 3 million people, where cases like Josefina´s practically don’t exist, so effective treatments in our country weren’t t available. At first, doctor recommended us to travel to Argentina, were we didn’t get good results using braces, so the possibility of successive surgeries were in our close future.
At the age of only 12 months Josefina’s scoliosis, was already twisted to 90°, compromising her lungs and heart. At that point she got a virus in her lungs and we ended up in the intensive care unit for almost two weeks with respiratory problems. Searching for the best option for her, knowing that it was very important and necessary to obtain the best possible correction to prevent future thoracic insufficiency syndrome, we came across ISOP and as we read about Mehta Casting, we knew immediately that it was the option we were looking for our little girl. Without hesitating we got in contact with Heather who gave us information and the support we needed to fight for being able to reach Mehta Casting treatment for our daughter.
With the advice and support of Heather we began searching for options. We knew it was going to be a long road but were determined to fight to give our girl the best option.
On august 2011 we began our applications to get Josefina accepted as a patient in Shriners Hospital for Children in Salt Lake City. We contacted local representatives from Shriners here in Montevideo and began making the applications to get her accepted as a patient in Shriners Hospitals. We found amazing people that helped us during this process knowing that this was the best option for my daughter and that she deserves to have this chance in life. Luckily, in September 2011 we received the best phone call in our entire lives, telling us that finally Josefina had been accepted as a patient in Shriners Hospital!!! That phone call changed our lives forever; we can’t express how good it feels to finally know that Josefina was going to have this opportunity, to know that we had achieved our best goal ever: Fight for the health of our lil Josefina giving her the best option for her condition.
In November 2011 we finally started this great journey, and travelled to Salt Lake City to have our first appointment with Dr. Jacques D´Astous at Shriners Hospital. He agreed that Jose was a good candidate for Mehta Casting and that in her case was the best option that will contribute to postpone corrective surgery until she got older. November 26th 2011 was the date when Josefina´s first Mehta Cast was applied and they managed to get a correction in her twisted spine of 40 degrees (her curve was 92 degrees before cast and the xrays in cast showed a curve of 52 degrees!). We were so happy for this great result and also seeing Josefina recovered so well, seeing her running around in her new cast!
Since November 2011, we´ve been travelling every 3 months to Shriners Hospital in Salt Lake City. Josefina is now 4 years old, she is wearing her 12th cast and is a healthy and happy girl. This alternative method to surgery, Mehta Cast, is allowing Josefina to grow older, with a good quality of life, buying valuable time and delaying surgery the more we can.
We would especially like to THANK ISOP and Heather for giving us the information and support we needed. If it hasn´t been for her advocacy and work we would have probably never know about Mehta Cast. We also want to thank Salt Lake City Shriners Hospital´s staff. From the very first moment we felt really comfortable on how Dr D´Astous and his team treated our daughter, their professionalism and excellent reputation made us feel absolutely convinced that we were on the right track. Every single person that is in touch with our daughter while we are in the hospital is just WONDEFRUL. Starting with Dr D`Astous, excellent person and professional, always explaining to us how Josefina is doing and taking the time to answer questions about her future. His team is also great, and compromised with every little one, caring and explaining every step they do. We would also like to mention the excellent work Anaesthesiologists do, their professionalism keep us calm knowing she is in really good hands. Also nurses, psychologist, and all the staff in Shriners Salt Lake City are just amazing and caring with our lil Josefina, making each procedure the less traumatic for her. We felt really blessed to have this opportunity for her, knowing that we still have a long journey to go, but feeling confident that we are on the right path.
This is our family priority, to fight for Josefina´s health, giving her a good quality of life while going through this process. We are receiving the help of our family, aunts, uncles, grandparents, friends and our community. They are helping us afford the cost of travelling every 3 months and we are really thankful for that too
We still have a long way to go and Shriners Hospital is our main allied on this journey. This gives us strength and hope in Josefina`s future, knowing that she is receiving the best treatment ever, and that we couldn`t have given it to her if it wasn´t for the help of Shriners.
With love,
Mariana – Josefina’s mom
