Hi Carol,

Welcome to our MM family!

I’m so sorry to hear about your son, my heart breaks for you. I can’t stop crying just thinking about what you must be going through. God love ya! Your son will be in my prayers!

I’m not at all familiar with how much MM experience the doctors have in England, but I do know that experience is so very important in the management of this rare disease. Dr. Steinberg is who I believe to be the best MM specialist in the country. If you send him copies of your son’s films and records, he would give you his expert opinion and would probably be able to tell you if your son can fly. My niece had 4 massive strokes and the doctors here could not help her, so she was medically air lifted to Stanford, and Dr. Steinberg saved her life, so I know it can be done, but with all the other problems we’re facing with air travel at this time, I wouldn’t doubt there would be some red tape involved. I pray not!

We’ve had other MM family here form the UK that has had successful MM surgeries at Great Ormond Street. AndyMac had a daughter Emily, for one, but I haven’t seen him here on the website for so long. There are also some other wonderful people here from the UK as well, Jane...Chloes Mummy & louise_and_Lydia. They’re two I thought of off the top of my head. So you're not alone.

Please know you and your son are in our thoughts and prayers, and if you have any questions or just need to talk, we’re here for you and will do anything we can to help.

God bless,
Mar

Carol,
Our thoughts and prays are with you, I cant really help with your situation because i know so little about the process, But wanted you to know that we care, and am please keep us posted on your sons progress and you treatment decisions
Mike