Taj-Mahal Photo for Mailia from Hari2011 found us bringing in the New Year with a beautiful email and greeting from a young man we have fondly come to know as "Hari" who is also Eisenmenger's Syndrome like Mailia, but a world away living in Mumbai India...and with his permission granted...we wish to share his first email to us, with you:
Hi Mailia and her wonderful parents,
My name is Harikrishnan K R. I am 28 years old and am a VSD - Eisenmenger's Syndrome patient. I was diagnosed with VSD at the age of 6 which was obviously beyond surgical stage. Doctor's suggested my parents that there is a chance for the defect (ie, the hole) to close by itself as age goes by. The medical follow up facilities in the country where I live (Kerala, India) was very minimal during my childhood and my family believed the doctor's word of a self future cure. I never had critical issues with my illness apart from panting when I run or walk through slopes and a blueish tinge on my finger nails and lips. I had myself involved in all sort of sports and games despite my physical limitations due to my illness. I had only 2-3 medical follow ups done in my life and I was 27 years old when I felt the first gear change of my illness.
I started coughing up blood due to the high pressure on my lungs. It happened in Feb-March 2010. Ever since then I am in regular medical follow up and now I live in Mumbai, India. I am seeing Dr. James Thomas a famous thoracic surgeon in India. He suggests a heart-lung transplant for me. My condition is getting worse for the past 2 months. I gave up my IT job and started working as an Office Clerk in an Import Company near to my home. Due to a recent hospitalization I'm afraid of losing that job too.
It was during my idle hours in home I started searching on the net for possible modern technics for a cure from my situation. It was during one of those session's I came across "Mailia's Miracle". I felt extremely positive after going through the entire story.
I want to thank from my heart for initiating such an online resource for sharing Mailia's story. In my lifetime I haven't seen a person who shares my grief. Later I found out it happens only to 1 out of 8 Lakh people. Even the right information about this condition is very rare in India. I came to know that my oxygen saturation is only 84-85 only when I was hospitalized last year. Mailia's story gives me hope and light to an extent that cannot be expressed by words. I wish and pray for the well being of Mailia as early and smooth as possible.
With lots of prayer's and wishes for Mailia.
Harikrishnan K R
So over the course of this past month, we have chatted and emailed Hari back and forth, covering all aspects of potential therapies and research he has inquired about, where it concerns Mailia's journey to be healed from Eisenmenger's.
One was the opportunity for us to email information to his Cardio Thoracic Surgeon, Dr. James Thomas about the path we are exploring for Mailia's future surgical treatments and Adult Stem Cell Therapy. Dr. Thomas so graciously accepted our communication with him...and we know, Hari is in good hands and we pray, will too...have a positive outcome now and bright future like Mailia.
Adult Stem Cell Therapy is in its infancy in India...but being afforded to those wanting to obtain it. Hari has a great support system both at home and in his medical team. Both Hari's parents are Ayurvedic physicians in India...hence, probably why Hari has been able to survive Eisenmenger's well into his late 20's including his practice of daily yoga. Ayurveda is considered a form of complementary and alternative medicine here in the west.
We encouraged Hari...to do his due diligence and find the means to possibly connect with Dr. Randas Batista down in Brazil so as to work with his heart surgeon with a possibility that might afford Dr. Batista to come to India to help him. We also encouraged Hari to start a web site and blog to start documenting his incredible journey, so as to help others in his region and country.
We humbly ask all of Mailia's followers to please send prayers and blessings to Hari...he too, is so diserving of our love and help. Thank you Hari...for finding Mailia's Miracle!
The Goforth's...Max, Andrea & Mailia