Alva Manzi is a bright and full of life 7 year old boy from Uganda who I had the pleasure to see in consultation in Jinja, Uganda while there on a surgical mission trip. As the pictures tell you he has a large tumor of his face and neck known as neurofibroma. Unfortunately this mass got to such a large size that is compressing his airway, in addition to limiting his hearing, vision and inability to eat. He needs our help NOW before it’s too late.
GPSA is coordinating plans for surgical care either in India or in the USA but there is a 15,000$ cost associated with this and any financial help to offset the cost can help.
After numerous hours of meetings and coordinated efforts across different time zones and continents out team manage to coordinate travel and surgical care for Alva in India.
As time was running out and the mass was compressing Alva’s airway we had to rush to get him intervened as early and as safe as possible.
The surgical team lead by Dr.Krishna Shama Rao at BGC Gleneagles Global Hospital in Kengeri, Bangaluru was able to remove the mass that was that was compressing Alva’s airway and give him for the first time in years the ability to breath without difficulty. There were many challenges along the way and setbacks but after little over one month in India, Alva traveled back to Uganda to be reunited with his family and friends. There still remains a portion of the mass that affecting Alva’s right side of his face but given the extent of that mass and the involvement with vital structures our hope is that medical management will provide relieve and regression of the mass. To that extent the medication needed for the next two years, Selumetenib, a tumor growth pathway inhibitor is expensive and not available in Uganda thus our team now focuses on providing the financial help to get Alva this much needed medication.
Needless to say, Alva is now where he is because of the extraordinary help and dedication of numerous people who donated their time, money and knowhow to make this happen !
Special thank you to the Noble family, to Adina Home Care, Dr.Anil Punjabi, Dr.Ben from Uganda, Ed Drachenberg and Loma Linda University amongst many other who we are forever in debt for their generous help !
