Monday, July 31, 2017

Sad Day in the UK

Today is a sad day in the United Kingdom for the British people, as well as for supporters of #CharliesFight in the USA.  The UK political and grass roots leaders regarding rare diseases should strongly consider revamping their system.  There seems to be a lot more questions than answers in this high-profile case.  These ultra-rare muscular diseases must be addressed by the qualified doctors specialized in treating these type of conditions, not by their judicial system.  Doctor Hirano, for example, is instrumental in the life of Mr. Estopinan’s son, “Arturito” and had provided hope for the parents of Charlie Gard.

Regrettably, Great Ormond Street Hospital (GOSH) decided not to perform the recommended experimental medications and disallowed Charlie to fight for his life with the necessary advancements taking place in technology and the exclusive case-studied treatment available.  However, we are confident this case is the first of a long series of followers who will continue to support change for the UK judicial system and for GOSH to reconsider treating rare diseases as they should be!

Art Estopinan conducted his due diligence as a parent advocate and raised awareness to help these heroic parents.  We CONGRATULATE Connie Yates and Chris Gard for their bravery and courage.  They have set the stage for other parents to follow in their determined footsteps and find a solution of hope and confidence in the doctors that dedicate their lives to LIFE!  May Charlie Rest In Peace!

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