Paige died suddenly at just 6 yrs old
Unknown to anyone, Paige had a Brain Arteriovenous Malformation (AVM).
The Dr.'s told us she was born with this condition. If we had known, it could have been treated & Paige would be here today.
Learn More About Arteriovenous Malformation (AVM)
Causes of Arteriovenous Malformation (AVM)
The cause of Arteriovenous Malformation (AVM) is not known.
AVMs are thought to be congenital (present at birth), and researchers believe that they may arise from developmental derangements at the embryonic stage of vessel formation (at the fetal stage). However, this theory has never been clearly established, and some researchers believe that AVMs may arise after birth.
Unlike the association of head trauma, or other injuries with the development of dural arteriovenous fistulae (DAVF), there are no known environmental risk factors for AVMs.
Most AVMs are termed "sporadic," which implies that they arise spontaneously without a specific gene mutation being passed on from parent to child. There is no clear familial inheritance, except in families with Heriditary Hemorrhagic Telangiectasia (HHT). HHT patients are at some 10,000 fold higher risk of developing a brain AVM than the non-HHT population.
Signs and Symptoms
- Seizures
- Nausea and vomiting
- Persistent headaches
- Weakness on one side of the body or
stroke-like symptoms - Speech changes
- Numbness or tingling of the arms or
legs - Sudden loss of consciousness(with
rupture)
Diagnosis
If your doctor suspects your child has an AVM, the doctor will do a complete exam and one or more of the following tests:
- CT Angiogram-uses x-rays to produce multiple images of the inside of the body. This test uses X-rays to produce multiple images. These three- dimensional pictures of the brain can be used to further evaluate conditions that affect blood vessels within the brain.
- MRI with Magnetic Resonance Angiography (MRA) — This procedure uses radiofrequency to create accurate two- and three-dimensional images of the arteries in the neck and brain.
- Cerebral Angiogram – is a minimally invasive procedure which uses a special contrast, or dye, to observe blood flow in the brain. During the procedure, a small catheter is placed in a blood vessel in the groin, then it is used to reach the blood vessels that supply the brain. With the help of the special contrast or dye, an X-ray machine moves in different angles and takes pictures of the blood vessels. A team will care for your child throughout the procedure.
What are pediatric AVMs?
Arteriovenous Malformations (AVMs) are abnormal tangles of arteries and veins. They can occur anywhere in the body, but our team specifically manages and treats those that are present in the brain and spinal cord. These abnormalities are typically congenital and are present at birth. They usually are not detected unless they cause seizures, weakness or have ruptured and bled in the brain. Neurologic or life threatening sequelae are associated with each hemorrhage. There is a 4% per year risk of hemorrhage once an AVM has become symptomatic. Treatment is required to reduce that risk and subsequent problems associated with additional hemorrhage. Treatment for AVMs can be quite complex and it is critical that patients with this disorder be managed and surgically treated in a center with extensive AVM experience.
What is Hemorrhagic Telangiectasia (HHT)
Hereditary Hemorrhagic Telangiectasia (HHT) HHT is a genetic disorder associated with small AVM (telangiectases) of the skin, nose, and GI tract, and larger AVM of the brain, lung or liver. The AVM in the lung and brain are treatable but because AVM can continue to grow/enlarge, patients need careful and continued monitoring. Once an individual with PAVM and most probably HHT is identified, the family should receive genetic counseling and screening.
Help Our Cause
The Paige Elizabeth Keely Foundation is a nonprofit 501c3 (EIN-84-5024812) organization created in Paige’s honor.
Our goals:
-Raising awareness of brain Arteriovenous Malformations
-Educating communities about this treatable condition
-Establishing early detection screening programs
September 15, 2004 - May 3, 2019
Tyler Abizeid
On April 29, 2019, Tyler went to school and was picked up by his dad just like any ordinary day. He wanted a ride to the neighborhood park to play basketball with his friends, so his mother dropped him off with a friend and told Tyler: “I’ll see you in a little while.” Less than five minutes later, Tyler sent a text to his mother asking to come pick him up because he had a bad headache. It took his mother three minutes to get back to the park. By the time she arrived Tyler had already started losing function in his arms and legs; his pupils were extremely dilated.
When they got to the ER, Tyler already had blood on his brain. The blood kept spreading over the next couple hours and eventually clotted. Tyler had arteriovenous malformation in the brain (AVM). He was declared brain dead. The doctors told his family there was nothing left they could do. As Tyler’s family sat in the hospital for days, praying for a miracle, they were introduced to a nonprofit organization for organ donation called LiveOnNY. Tyler’s mother knew in her heart that Tyler would want to save other people’s lives if he had the opportunity to do so, and he did. He saved the lives of many.
Danielle’s AVM Journey
August 20th, 2019 was a typical summer day for Danielle. That morning she went to camp all dressed and excited to participate in color war. About two hours later she started complaining to her counselors that she was having trouble moving her right leg and asked to be carried to the nurse’s office. While there her horrific headache began. The camp nurse quickly called 911 and she was transferred to the hospital where a head CT determined she had a large amount of blood in her brain, which her parents would later learn was from a ruptured AVM. She was flown to the local children’s hospital for further treatment and remained there for over two weeks in the ICU. At that point Danielle and her family realized that their lives had changed in an instant. Danielle could not move her right leg and was just barely getting movement back in her right hand a few days after her first surgery. After recovering from two brain surgeries, the next four weeks continued to be a challenge as Danielle regained use of her right arm and leg through intensive physical therapy.
Over this past year, Danielle has continued to face and defeat challenges. In September 2020, (approximately one year after her initial diagnosis) it was discovered that Danielle’s AVM grew back and she required another surgery to remove it completely. She is currently working incredibly hard in physical therapy in order to reach every goal she has set for herself. Danielle was an athletic girl prior to her AVM rupture, and she is looking forward to picking up in dance and gymnastics right where she left off!
Barbara's AVM Journey
I have had 3 very severe and debilitating headaches (9.5 on the doctor’s 1 to 10 pain scale). The first one I assumed was because of allergies; it happened as soon as I woke up in the morning; that was in late March and went away after a few hours of sleep.
The second bad headache happened about 3 weeks ago, again, as soon as I woke up in the morning. This one lasted longer, and it took over a week for the headache to disappear. That’s when Scott and I decided that I needed to go to the doctor (especially because of my Mom’s history…I got pretty scared). I went to the Dr and she took a bunch of blood and signed me up for an MRI (with and without contrast). That MRI was on Thursday morning. I had my 3rd debilitating headache on Thursday afternoon, this one started right after lunch and took a couple of hours to move up the pain scale from 1 to 9.5. I slept from 4pm to the next morning and went to work Friday with a dull headache. For those of you trying to count backwards from our last encounters together (this was DEFINITELY before Calgary, and I’m about 80% sure very shortly before book club at my place)
On Friday afternoon I was supposed to hop on a plane to Montana for 2 weeks. First week to teach at IU field camp and the second week vacation at cabin. I was in the airport and right as they announced pre-boarding for my flight my phone rang, it was my doctor. She said that the MRI shows hemorrhaging in my brain and asked where I was. In between crying spurts I told her that I was at the airport in line to board a plane to Montana for 2 weeks. She freaked out and told me to NOT get on that plane and rush myself to the ER at Methodist so I can be seen by a neurosurgeon there (not a good way to keep your patient calm, but necessary at that point). So, I turned around, left the airport and caught an Uber to the Med Center and Scott met me at the ER. Was there all night (as my luggage flew to Helena and back).
Pretty crazy and scary. They ran 2 CT scans and both came up negative, which informed the Doctors that it was “old blood” on the MRI (I wasn’t actively bleeding). The MRI just showed blood, but you can’t tell anything else. None of the images or tests show any abnormality that appears to have caused the stroke. There are 2 main theories: A) in my brain there are some arteries that are directly attached to veins without capillaries, so there is no high-pressure to low-pressure mechanism and that can cause some blood vessels to burst, or B) I have a tumor that is causing the swelling/bleeding that is being hidden/masked by the blood. Theory A can be tested (most likely Tuesday) by having a procedure called an angiogram done. In theory B, I have to wait for the blood to be absorbed back into my body and have another MRI in a month or two to see if there is a mass there.
Jenna's AVM Journey
On Super Bowl Sunday (February 2, 2020), Jenna suddenly lost consciousness and stopped breathing. Her dad, Ryan, administered CPR. At the local hospital, doctors realized the gravity and urgency of her condition and had her medevaced with her mom, Kelly, via helicopter to the regional pediatric ICU. There, medical staff found an arteriovenous malformation (AVM) which had burst, causing major hemorrhaging in her brain. Two surgical interventions so far have kept her in the fight. Jenna likely was born with this condition, which sat dormant until that day.
Just the day before, Jenna played in her soccer game, spent time with her friends and family, and showed no symptoms of distress.
Jenna’s, AVM was located on the left side of the brain.The left side of the brain controls speech & mobility.
Her mother Kelly, never left her side and watched her daughter fight for her life for over 50 days!
Kelly told me “ It’s minute by minute, 2 steps forward 2 steps back. Always keeping in the back of her mind, planning her daughters funeral.
Jenna is a total miracle! The Sheehy family almost lost her 2 times. No one working on her hospital floor could believe what she has done.
On March 13, 2020, Jenna was finally strong enough to have the go through another terrifying hurdle. Getting that devil out of her brain.
After an extremely long, fragile survey Jenna’s mother shared this message.
“Jenna is back in her room on the ICU floor and sleeping well. Thank God the AVM is successfully out of her head. She is a miracle and I will continue to thank God for her everyday.”
On March 28, 2020 , after 8 weeks of the emotional rollercoaster no FAMILY SHOULD EVER ENDURE . Jenna, was OUT ! Jenna was released from the hospital and off to rehab. She has a long road of recovery ahead.
Thank you Kelly for sharing your journey with me and now sharing it with the WORLD.
Jenna Sheehy kicked her AVM’s ass - She will move mountains!
Help Our Cause EVERY CHILD SHOULD BE SCANNED!
Please consider making a donation to the Paige Elizabeth Keely Foundation. We are a non-profit organization created in honor of our daughter Paige Keely. (501(c)(3)) (EIN: 84-5024812)
No family should have to go through the pain of losing a child when early detection could have kept our beautiful 6 year old here with us.
Through early detection and research other families can be spared the horrors that we endured.
Your generous gift allows us to pursue our mission:
-Raise awareness of Arteriovenous Malformation of the brain, (AVM)
-Fight for earlier detection
All contributions are tax deductible under applicable laws.