"Please feel free to post your personal remembrance, and honor those that are no longer with us."
"Please note: This is a Memorial Forum, we ask all visitors to remember that, and to respectfully post and comment accordingly."
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"Created for the AVM Survivor Network Membership,...by the AVM Survivor Network Moderator Team"
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My first friend on the AVM Survivor's Network was Mike Roberts from Boston, MA. Mike passed away in 2010. RIP Mike, you always gave me so much support when I needed it!
Taitlynn Shae Hughes passed away in November 2011 from a massive brain bleed. Taitlynn from Martinsburg, WV, was a beautiful, loving 12 year old girl. Before Taitlynn even knew she had an AVM, she asked her Mom to donate her organs. Because of Taitlynn's request, many lives have been saved. Rest in Peace, beloved Taitlynn!
I never met Taitlynn Shae Hughes, I now wish I had the opportunity to do so. I could have learned so very much from this beautiful, vibrant, young lady, (ie) how to live and love life and appreciate each and every moment. So,...Rest In Peace Taitlynn, there will always be a place in my heart for you, and know that your memory lives on.
14 years ago we lost our beloved 12 year old daughter Patricia to an AVM. Tommorow she would have celebrated her 27th birthday. We miss her everyday. The irony is that we decided a year after her death to have another child. We were blessed with a son and named him Bradenn. On mothers day of this year after three days of headaches and vomiting it was discovered that he had a bleed going on that turned out to be an AVM. By the grace of God we have been spared a second loss. So we grieve for the loss of Patricia but we celebrate the preservation of our son. God bless you Sissy! Mommy and Daddy and your sisters and brother miss you everyday. Love you Daddy
This is my daughter, Taitlyn Shae Hughes. She is forever 12 years old. She passed away from a posterior fossa AVM on November 6, 2011. 10 months later I am still struggling to live life without her as you can imagine. I am forever changed and it is not for the better. We had NO idea she had an AVM. She had no symptoms. No warning.
I can't imagine what you are going through, I have two teens myself. I lost my 44 year old boyfriend to AVM this past March. He always complained of headaches though not too severe. He did seek out doctors, but they felt it was sinus in nature. I believe they did a cat scan, but not an MRI. I don't know if he told the doctor that his mother and grandmother both died of a brain tumor. Had he told them, they might have done an MRI and caught this in time. He also collapsed without warning, was found in a parking lot. He was rushed to the hospital, had two brain surgeries, but was comatose for 17 days and ultimately died. As hard as that was, the picture the doctor painted was not a pretty one. If he woke up, he probably wouldn't have been able to take care of himself, work,talk, swallow. There was too much damage. And I know he wouldn't have wanted that.
I can't imagine losing a child. That is the worst nightmare. I have been coping with trying to keep his memory alive. I started a scholarship in his name at his college. So far, 6500 is raised, on our way to 15,000 for a permanent scholarship. I tell everyone I meet about AVM, hopefully it will help one person. Some people have symptoms before, and through education maybe someone could get prompt treatment.
This is heart-breaking, I also have 2 teenagers. The ultimate loss is the loss of a child. I lost my first son during pregnancy and that was awful to bear but losing a child without any warning, is devastating. I lost both parents to AVM, my dad in 2000 (age 61) and my mum March 2012 (age 66).
My mum was orphaned at the age of 11 and when she told me this (I was aged 8), I
always felt that I had to 'protect' her. She was a strong woman and didn't need
protecting but I was always there for her, at the drop of a hat.
I send you hugs.
I cant believe you've been gone since April 6, 2008. Still not a day goes by that I dont think of you. I miss your laugh and all the fun we had together. You were my best friend and I loved and still love to this day. Still till this day I want to pick up the phone to tell you something funny. Then it hits me all over again you're no longer with me, only in my heart. I just wish we had a 1-800 to heaven just so I could hear your voice one last time. I feel there is so much I never got to tell you. I love you and miss you always, Melissa
First of all I would like to thank everyone for welcoming me.Losing someone is hard, going through it and being a survivor is the most courageous thing,my heart is full of love for you all. my sister passed away 3 yrs ago,ive made a page for her on fb but there are times when i feel people mistake my page for not letting go,in some ways they are right but not the way they think..i do it for awareness so they will not have to go through the same heartbreaking ordeal. my sister had severe migraines a month before that day she fell unconscious,on the way to the ememrgency i felt so helpless in the ambulance with her. All i could do is talk to her and tell her i loved her.I was in shock! When we got there to the ER they told me i needed to go sign forms for her,(to this day i feel i should of stayed with her and refused to leave her) when i was going to sign forms i will never forget, she could not move but stood motionless staring at me..my heart aches to this day thinking about it.during those 2 wks were life changing,she had a few opereations but drs said was born with avm in the back of the stem in her brain,and this was just one of many to come of the anuerysms to rupture, they also said there was no brain activity. I spend the night with her at the hospital every other night hoping i would move,make a sound,or write on a tablet for me, was hoping anything any kind of sign... On OCT> 27 2009 my sister was taken off life support but before she was she married her lifelong love Chico-man (rip)in a little ceromony in her hospital bed.. Oct 28th she went to be with the Lord,nothing is harder than watching a loved one taking their last breath,,(Ive went through it 3 other times,my sister Audrey nov 25th 2003, my son Jr Trisomy 18 oct. 24th 2004,,my brother Jess liver cancer dec,24 2009) So once again iam so grateful to you all for allowing me to be apart of AVM.ORG God BLESS and may GOD be watching you always<3
Our precious 5 year old Connor Caldwell passed away one week ago on January 12, 2013. We are so heartbroken. Connor was first diagnosed with a brain avm at age 3. He underwent 15 brain embolizations during the last 2 years and was such a trooper. He suffered a massive bleed in early December and was hospitalized for 6 weeks before he died. He is now healed in heaven and is with Jesus.
Dearest Kim, please accept my sincere condolences on the loss of you beautiful son Connor. I remember Connor and talking to you at different times about Connor. He certainly was a great trooper and I will never forget him. He is at peace now and as you say, he is with Jesus. My prayers are with you and your family.
My sincerest condolences for your loss. No parent can read of your story and not cry. It is the worst nightmare any of us can imagine, and sadly, for you, it is real.