Help us as a family get to America

Hi my name is Swaylee I am the mother of a 9 year old boy Hendrix. Most of you may know him. At 2 months old Hendrix caught conjunctivitis which resulted in 4 times a week hospital visits over 200 operations and has loss vision in one eye. Hendrix was diagnosed in 2015 with a rare blood disorder called hypoplasminogeneamia. This is a plasminogen defiency which affects wound healing and formed psuedomembranes throughout the body and can be life threatening. He has had lesions form in eyes, sinuses, stomach, lungs, gums, ears and pray he doesn’t get them in the throat. This is a really rare blood disorder and I believe he is the 6th person in this country with it. For Hendrix to heal he needs plasma infused into the blood which has been licenced in America and Hendrix has been on the trial but at present it isn’t available in the uk as of yet. So it means numerous hospital visits and pumped with intravenous fresh frozen plasma. A opportunity has become available to go to a conference in Maryland America for the 15th august to meet with other patients and doctors to discuss manifestation and what to expect in the years to come and to come together to meet with other patients and their experiences. To armour ourselves with all the knowledge we need about this condition and bring this home to uk to help other people who may become affected by it. This is a once in a life time opportunity and I am hoping to get us as a family there. We also aim to unite to try and get the medication over for all patients in the uk. If we can’t reach that goal atleast enough to get myself and Hendrix to attend. Any donation would be welcome. Thank you so much x