Our son Riley, age 6, died last month from his AVM. He had a giant AVM in an eloquent area. He was not a candidate for surgery nor any sort of embolization, and many of the doctors said that it was simply too dangerous for him to undergo radiosurgery at his age. One neurosurgeon told us that if we had treated him with radiosurgery at this point, the last year of his life would have been horrible (I suppose because of his age).
You both have my most sincere empathy, sympathy, and condolences for the loss of your son. As Nicole so eloquently stated,.."I hope you can find some comfort here and please stay strong!"
Please know we, The "AVM Survivors" are here for you both.
I am saddened beyond words, by your news. You are living the greatest fears of every parent on this site. We are praying for your family as you celebrate the time you had with Riley, and grieve the terrible loss. I can’t even begin to imagine how difficult this is. I pray that you will find peace. Hugs.
Please accept my sincere condolences on the tragedy of the loss of your son.
I cannot imagaine your grief but I will be praying for you and your families.
As William said to you, please know that we, the AVM Survivors are here for you both. If we can do anything, anything at all to help you, please let us know. My prayers are with you all.
Thank you for posting about Riley. May you always find comfort in the happy memories of his childhood and find peace. I'm sure you always did what was best for him and made his life the best it could be.
I give my condolences to you and your family. the lose of a child is unbearable at times but i hope you can find this group as a great support group and gain more information about AVM’s. I will keep you and your family in my prayers. Stay Strong.
Hi Lee & Chanel, I am so sorry to hear about your son. My heart goes out to you and your family. I have 4 children of my own and could only imagine what you are going thru. My thought and prayers go out to you and your family in your time of need. I hope that your family finds peace in time and celebrate the time you had with Riley and all the good times and memories you have. He will always be with you in spirit. Sorry for your loss.
Please accept my heartfelt condolences for your tremendous loss of Riley. Words must feel so empty to you right now, but please know, if there is anyway that any of us here can be of help, or comfort, or offer support in any way, we are here.
Please take good care of yourselves and each other.
Hello, my deepest sympathies to both of you. It must have taken courage to get on this site and write about Riley. I hope your memories of him will keep you going when times get tough.
Thank you everyone for your kind words and support. The hardest thing is just missing him. We also struggle because we (along with the most of doctors) decided to hold off on radiosurgery until he was at least 7. He just didn't make it to 7. Of course, now we feel like we should have treated already, even though the size (6 cm * 8cm), placement (deep/eloquent area) and especially his age made treatment questionable/potentially very dangerous. We would have second guessed ourselves no matter what, but this whole thing just adds to everything being so awful. Ugh.
My deepest sympathies on the loss of your son. I hope you find comfort in the great years your had with Riley. All of us here are here for you. Best wishes always.