Please consider donating this month (any month) to a Nonprofit that is close to my heart: Brain Aneurysm / AVM Community Together Survivor Support Association (ACT).
They have supported our family from the start and assisted Abbey getting second opinions during her journey. In fact, Abbey was their first recipient for assistance thanks to their “Second Opinion Program”. They are a community of AVM and aneurysm survivors with a wealth of knowledge and support. We have learned so much from them.
Unfortunately, like most we had to learn the hard way. I was told the best way to bring awareness is to tell your story to others.....
(It is a long read but please read through)
Christmas Day 2016 our daughter Abbey was playing with her new Christmas toys, happy as she could be. Anyone that knows Abbey knows Christmas is her favorite holiday!!
Then, out of no where Abbey grabs at her head and starts crying. “Ow! Ow!” is all she would say. Then as quickly as is hit her, it was gone. We comforted her and thought she was “Christmas crashing” and ready for a nap. We took her upstairs and laid her down. She then started vomiting. Now we thought she caught the flu that had been going around. I laid with her while she napped and monitored for a fever. Never had a fever. After her nap went downstairs and just cuddled hoping she would feel better soon. Abbey would rest, try to eat, nothing would stay down. She would have moments where she was more alert and sit up and talk with us, then she would be tired again.
I slept with Abbey that night in case she got sick again. Abbey slept through the night. The next day she was tired and weak, still no fever. As the morning went on she was able to keep some fluids down but still couldn’t eat. She started to present with more fatigue and increased weakness. Now we decided to take her to the ER, thinking she would just need fluids and maybe anti-nausea medication. By now she needed assistance walking due to poor balance which we thought was because she was just weak. We still thought she had some kind of bug but now we started worrying thinking something more like meningitis??
Once in the ER, our doctor came to examine Abbey. We thank God everyday Dr Haskins walked into our examine room. He explained as an ER doctor he is made to think the worst and wanted to get some imaging of Abbey’s head. We were a little shocked but 100% agreeable. We just wanted our baby felling better. Thank God he thinks the worst because if he would have sent us home that night without imaging, we would have lost Abbey.
Results came back, we knew it was bad when the doctor comes in and closes the curtain and the door behind them and tells us to sit down. He explains there is a mass on her imaging. He can’t tell if it is a tumor or a bleed. More imaging would be needed. Time immediately stopped and our lives have not been the same since.
Immediately admitted to Pediatrics ICU and placed under neurosurgery care. After further imaging, we are told she was born with a brain AVM and it ruptured. That was the headache she had on Christmas Day. They call it a “Thunder Clap” headache. Due to bleeding and swelling she would need emergency brain decompression surgery.
Abbey had craniectomy (remove skull flap), then 6 weeks later had craniotomy to replace her bone flap once all the swelling decreased.
Fast forward to today....Abbey is 6 years old and loving 1st Grade! She ended up having skull reconstruction at John Hopkins Hospital this past June with a Pediatric Plastic Surgeon because her original bone flap resorbed and she was vulnerable to head injury. We will have more follow ups this year and pray to God everything will be good so this little girl can get back to doing little girl things again!
So, that is our story in a nutshell. If by putting our story out there helps just one family, it was worth it! Please keep in mind, both my husband and I are in healthcare, and we had NO idea about AVMs.
Unfortunately, it took going through this process to learn.
So please know the signs and symptoms and go seek medical help sooner than later!
I would like to say how thankful I am for ACT and it's recovery relief program. I have an AVM ( Arteriovenous malformation) and it has ruptured twice causing two massive strokes. As a result of those strokes I was left with 30% permanent vision loss. I don't have vision insurance so I've gone almost 2 years with no glasses which I desperately needed after my strokes. Thanks to ACT and the recovery relief program I applied for help and they were able to pay for my exam AND my glasses. I will forever be grateful. Thanks ACT 💚💚💚
I want to express my eternal gratitude to Brain Aneurysm/AVM Community Together Survivor Support Association (ACT), my support group, and the non profit organization that is funding my trip to Phoenix Arizona for this life saving surgery!! I don't know what I would've done without this group!! They were literally my life line when I was first diagnosed, and still today. I've met some amazing people in this group that will forever be a part of my life!! Much Love!! 💜💜
Most of you don't know that I was dropped as a patient by UT Southwest for simply seeking a 2nd opinion from Barrow Neurological Institute, because it contradicted UTSW opinion. ACT stepped up and made my trip to the world renowned facility, and doctors possible. For my birthday coming up in a few weeks, I've started a fundraiser for this non profit organization. If you can, please donate. Every little bit helps, and it's the donations they receive that makes it possible for them to help people like me.
Dr. Lawton, President, CEO, and Chief of Neurosurgery will be preforming my surgery. I'm having a craniotomy done. March 9th, will see doc, and do pre-op. March 10th will have my angiogram. March 11th will be surgery. I'll be in the hospital 2-3 days barring no complications. To say I'm nervous would be an understatement. I'm terrified!! If all goes well, this will be a permanent fix. Thanks again for all the continued support I've received. 💜💜
My wife Leticia and I came from Brazil in 2017 and on August 1, 2019 she had a ruptured brain aneurysm. Being foreigners makes things way harder when it comes to seeking help and supplies. According to one social worker I would not get any Government assistance because we are not American Citizens. That’s when a friend Melissa Brown added me to the support group Brain Aneurysm/AVM Community Together Survivor Support Association (ACT). I posted about my wife’s story and Cindy Davis redirected me to talk to Sharon Charlton Adams where I could get help getting a lot of the supplies that we needed. With the help of this non profit and their two programs, Recovery Relief and Jay’s Way we were able to get Diapers, pads, a shower chair and other things that I could not and still cannot afford. We have no words to describe how thankful we are for this tribe. You are angels.
Fernando Petrulio and Leticia Ribeiro