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Sometimes the strongest, most giving, caring people don’t realize it’s OKAY to be helped in return. Brittany Mease, Bmea, has dropped everything for people she doesn’t know just to lend a hand. Continually, looking out for the well being of others, at the sacrifice of her own. She truly goes to end of the earth to help if she can.
Right now, their world is turned upside down. Preparing for Ily Rae’s 4th brain surgery on December 19, 2019 is not exactly how a family, much-less single mother, prepares for.
Brittany set up a page ( Ily to Infinity) for Ily years ago for Chiari Awareness. On a post she stated:
“This year, all I want for Christmas is for Ily to wake up at home Christmas morning. I want to be at home, with both of my kids, and I want them to see their gift under the tree. This year all I want is awareness for Chiari. Share a post. Buy a shirt. Wear it. When someone asks you about the shirt, tell them about this nasty disease that’s taken so much from my family.
I know I’m not good at showing how grateful I am and I’m even worse at asking for help, but I promise right next to the extreme feelings of exhaustion and confusion I’m overwhelmed by love and care from family, friends, and even strangers.”
With that, I’d like to reach out as an extended family of Brittany, Graysen, and Ily to ask for help. Brittany will be faced lost wages due to hospital stays, therapies, and appointments. Brittany also faces some necessity charges that insurance will not cover.
Most importantly, Please keep praying for Ily and our family as we prepare ourselves for a moment we never thought would happen.
********* The Story **********
By: Brittany Mease
♾
Ily (eye-lee) is a 7 year old triple brain surgery survivor who is scheduled for a 4th brain surgery on December 19, 2019.
Ily has Chiari (kee-AH-ree) 1.5 Malformation, an advanced form of Chiari, with Syringomyelia and is symptomatic.
So, what’s going on inside that beautiful brain of hers?
•Crowding and herniation•
Chiari begins with the underdevelopment of the fetal skull during pregnancy. During childhood, the brain continues to grow and the skull hardens. However, the small size or shape of the Chiari skull is mismatched to the size of the brain. Thus, a crowding of the brainstem, cerebellum, and tonsils occurs. Crowding pushes part of her brain out of the skull through the opening where the spinal cord exits. Herniation of the cerebellar tonsils can extend several millimeters below the foramen magnum. The tonsils put pressure on the brainstem and spinal cord, block CSF flow, and result in the Chiari signs and symptoms.
•Cerebellum herniation•
The cerebellum is the lower part of the brain located in the posterior fossa. On the underside of the cerebellum are two tonsils. The cerebellum coordinates body movement. It maintains muscle tone and balance. The cerebellum is also involved in attention, language, memory, and learning. Signs of cerebellum problems include loss of coordination, unstable walking, trouble with speech, and difficulty with eye movement and swallowing. Ily was diagnosed with Neurogenic Dysphagia and is unable to swallow at times because of this.
•Brainstem compression•
Acting as a relay center, the brainstem connects the cerebrum and cerebellum to the spinal cord. The brainstem performs many automatic functions such as breathing, heart rate, body temperature, wake and sleep cycles, digestion, sneezing, and coughing. Ten of the 12 cranial nerves originate in the brainstem. Ily’s brainstem is SEVERELY compressed.
•Cerebrospinal fluid blockage•
Cerebrospinal fluid (CSF) is a clear, watery-like liquid that flows within and around the brain and spinal cord to help cushion it from injury. This fluid is produced inside the ventricles by the choroid plexus and is constantly being absorbed and replenished.
The CSF flows through the ventricles and out into the space between the brain and skull (subarachnoid space) and down into the spinal canal. A large amount of CSF lies at the back of the cerebellum in an area called the cisterna magna.
As the heart beats, CSF flows into the brain. This is normally balanced by CSF then flowing from the brain into the spinal compartment. In a Chiari malformation, this balanced flow is disrupted. The obstructed CSF begins to force its way like a water hammer through the foramen magnum. Pushing the tonsils down even farther, it exerts pressure on the brainstem. The increasing pressure compromises normal functions of the brain and/or spinal cord and a myriad of symptoms occur.
•Syringomyelia•
When cerebrospinal fluid (CSF) flow is obstructed and collects within the spinal canal, it can eventually form a syrinx. This condition, called syringomyelia (pronounced sir-RING-o-my-elia), damages the spinal cord. The compressed nerve fibers inside the cord cause a wide variety of symptoms. Problems affect the arms or legs, or affect feeling, strength, or balance. The growing syrinx destroys the center of the spinal cord, resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs. Other symptoms may include a loss of the ability to feel extremes of hot or cold, especially in the hands. Some individuals also have severe arm and neck pain. Ily developed a syrinx after the 2nd brain surgery. She had a third brain surgery in hopes to correct it, but it’s back.
•The fix•
There’s not one. No cure. It sucks.
She will hurt in some form or fashion her entire life. Older Chiarians can testify. I hate it but I know it’s manageable. It has to be. As long as I am the one in charge of making her medical decisions, I will do my best to educate myself on how I can help her. The amount of pressure I feel to make such life changing decisions is incomprehensible. I never know if I’m making the right decision or not.
I am praying that her 4th brain surgery scheduled for December 19th will help eliminate a lot of the frequent symptoms she experiences.
I’m praying the stent they are going to be placing in her brain from the 4th ventricle to the subarachnoid helps keep her CSF flowing better and eliminates the syrinx, which would help eliminate a lot of symptoms.
I am praying that the complete tonsillar reduction will also aid in the crowding and compression of her brain.
I want awareness.
I want people to understand how Chiari affects simple day-to-day life.
Ily (eye-lee) is not alone in this battle. There are several Chiari warriors out there fighting their own unique battle and I pray for them. I advocate for everyone affected by this.
Ily is only 7 and is preparing to have her FOURTH brain surgery.
December 19, 2019 at 0730.
Fourth. Brain. Surgery... at SEVEN years old.
Something has got to give.
We need awareness.
We need a cure.
Right now, their world is turned upside down. Preparing for Ily Rae’s 4th brain surgery on December 19, 2019 is not exactly how a family, much-less single mother, prepares for.
Brittany set up a page ( Ily to Infinity) for Ily years ago for Chiari Awareness. On a post she stated:
“This year, all I want for Christmas is for Ily to wake up at home Christmas morning. I want to be at home, with both of my kids, and I want them to see their gift under the tree. This year all I want is awareness for Chiari. Share a post. Buy a shirt. Wear it. When someone asks you about the shirt, tell them about this nasty disease that’s taken so much from my family.
I know I’m not good at showing how grateful I am and I’m even worse at asking for help, but I promise right next to the extreme feelings of exhaustion and confusion I’m overwhelmed by love and care from family, friends, and even strangers.”
With that, I’d like to reach out as an extended family of Brittany, Graysen, and Ily to ask for help. Brittany will be faced lost wages due to hospital stays, therapies, and appointments. Brittany also faces some necessity charges that insurance will not cover.
Most importantly, Please keep praying for Ily and our family as we prepare ourselves for a moment we never thought would happen.
********* The Story **********
By: Brittany Mease
♾
Ily (eye-lee) is a 7 year old triple brain surgery survivor who is scheduled for a 4th brain surgery on December 19, 2019.
Ily has Chiari (kee-AH-ree) 1.5 Malformation, an advanced form of Chiari, with Syringomyelia and is symptomatic.
So, what’s going on inside that beautiful brain of hers?
•Crowding and herniation•
Chiari begins with the underdevelopment of the fetal skull during pregnancy. During childhood, the brain continues to grow and the skull hardens. However, the small size or shape of the Chiari skull is mismatched to the size of the brain. Thus, a crowding of the brainstem, cerebellum, and tonsils occurs. Crowding pushes part of her brain out of the skull through the opening where the spinal cord exits. Herniation of the cerebellar tonsils can extend several millimeters below the foramen magnum. The tonsils put pressure on the brainstem and spinal cord, block CSF flow, and result in the Chiari signs and symptoms.
•Cerebellum herniation•
The cerebellum is the lower part of the brain located in the posterior fossa. On the underside of the cerebellum are two tonsils. The cerebellum coordinates body movement. It maintains muscle tone and balance. The cerebellum is also involved in attention, language, memory, and learning. Signs of cerebellum problems include loss of coordination, unstable walking, trouble with speech, and difficulty with eye movement and swallowing. Ily was diagnosed with Neurogenic Dysphagia and is unable to swallow at times because of this.
•Brainstem compression•
Acting as a relay center, the brainstem connects the cerebrum and cerebellum to the spinal cord. The brainstem performs many automatic functions such as breathing, heart rate, body temperature, wake and sleep cycles, digestion, sneezing, and coughing. Ten of the 12 cranial nerves originate in the brainstem. Ily’s brainstem is SEVERELY compressed.
•Cerebrospinal fluid blockage•
Cerebrospinal fluid (CSF) is a clear, watery-like liquid that flows within and around the brain and spinal cord to help cushion it from injury. This fluid is produced inside the ventricles by the choroid plexus and is constantly being absorbed and replenished.
The CSF flows through the ventricles and out into the space between the brain and skull (subarachnoid space) and down into the spinal canal. A large amount of CSF lies at the back of the cerebellum in an area called the cisterna magna.
As the heart beats, CSF flows into the brain. This is normally balanced by CSF then flowing from the brain into the spinal compartment. In a Chiari malformation, this balanced flow is disrupted. The obstructed CSF begins to force its way like a water hammer through the foramen magnum. Pushing the tonsils down even farther, it exerts pressure on the brainstem. The increasing pressure compromises normal functions of the brain and/or spinal cord and a myriad of symptoms occur.
•Syringomyelia•
When cerebrospinal fluid (CSF) flow is obstructed and collects within the spinal canal, it can eventually form a syrinx. This condition, called syringomyelia (pronounced sir-RING-o-my-elia), damages the spinal cord. The compressed nerve fibers inside the cord cause a wide variety of symptoms. Problems affect the arms or legs, or affect feeling, strength, or balance. The growing syrinx destroys the center of the spinal cord, resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs. Other symptoms may include a loss of the ability to feel extremes of hot or cold, especially in the hands. Some individuals also have severe arm and neck pain. Ily developed a syrinx after the 2nd brain surgery. She had a third brain surgery in hopes to correct it, but it’s back.
•The fix•
There’s not one. No cure. It sucks.
She will hurt in some form or fashion her entire life. Older Chiarians can testify. I hate it but I know it’s manageable. It has to be. As long as I am the one in charge of making her medical decisions, I will do my best to educate myself on how I can help her. The amount of pressure I feel to make such life changing decisions is incomprehensible. I never know if I’m making the right decision or not.
I am praying that her 4th brain surgery scheduled for December 19th will help eliminate a lot of the frequent symptoms she experiences.
I’m praying the stent they are going to be placing in her brain from the 4th ventricle to the subarachnoid helps keep her CSF flowing better and eliminates the syrinx, which would help eliminate a lot of symptoms.
I am praying that the complete tonsillar reduction will also aid in the crowding and compression of her brain.
I want awareness.
I want people to understand how Chiari affects simple day-to-day life.
Ily (eye-lee) is not alone in this battle. There are several Chiari warriors out there fighting their own unique battle and I pray for them. I advocate for everyone affected by this.
Ily is only 7 and is preparing to have her FOURTH brain surgery.
December 19, 2019 at 0730.
Fourth. Brain. Surgery... at SEVEN years old.
Something has got to give.
We need awareness.
We need a cure.
Organizer
Brittany Bowley
Organizer
Henderson, TX