Tuesday, July 11, 2017

HOLLAND: In Search of a Cure

An unparalleled experience in the travelled to North Holland this month in hopes of good news while searching for a cure for rare diseases.  Absolutely enlightened in a room filled with doctors from all over the world and individuals who vest their maximum effort in experiments and case studies to essentially help those with rare diseases. 
There are already 18 children living whose tracheostomy’s have been removed because of these experimental medications.  Now there are new optimistic results in processes tried on mice intravenously are setting better expectations for HOPE in saving the lives of more children with rare diseases sooner, since time is of the essence.  Attending this ENMC Conference and further educating ourselves on how treatments are created is impressive and compelling beyond emotions for parents everywhere.   
LONDON:  The Power of Love 

Connie Yates and Chris Gard parents to Charlie who has RRM2B and are working with prominent ethic medical doctors in supporting efforts to save their son.  Imagine a hospital wasting six months of precious time and now removing all parental rights to a child who needs technology to stay alive!   Art witnessed the response from Charlie when these hopeful parents give their son love and affection.  Charlie smiles when his parents rub his cheeks and, at times, opens his eyes to the sound of his parent’s voice. 
There are premier mitochondrial doctors in the USA waiting to help save Charlies Life- since there is NO support in the United Kingdom from doctors or their government.  These parents seek permission to travel with their son for a three-month trial of experimental drugs.  During Art's recent visit to the UK, he assisted this family in conducting rallies and in sharing his positive results from experimental medications with his son Arturito.  We show our support by pleading...                                                                                                                                Let Charlie Go to USA!!!!

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