Delilah's Medical Costs
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Hi! My name is Alyssa. My daughter Delilah is a little girl with a big heart. She's four years old and has been through a lot in the past year.
In November 2015, Delilah got a concussion. As worried parents, we took her to the ER after she began vomiting. At the ER, they did a CT scan which revealed that she had a condition called Chiari Malformation. We had never heard of it before and the ER doctor didn't even know how to pronounce it. We left feeling very anxious, not knowing how serious her newly diagnosed condition was.
Our next step was to get a brain MRI to confirm her diagnosis. Shortly after, her diagnosis of Chiari Malformation was confirmed. I did a lot of research and found a neurosurgeon that specialized in Chiari Malformation. We met with him and he ordered yet another round of MRIs including a brain and full-spine MRI.
It was after the brain and full-spine MRI that we found out that not only did Delilah have Chiari Malformation, but she also had Syringomyelia.
Chiari Malformation is a condition where part of your brain is being squished out of the hole in the skull (foramen magnum) and into the spinal cavity. Delilah has an advanced form of Chiari Malformation called Chiari Malformation Type 1.5. Not only is part of Delilah's cerebellum being pushed out of her skull, so is some of her brainstem. This is very scary because your brianstem controls all of your basic life functions such as your heart rate and breathing.
Syringomyelia is a condition where there are fluid filled cysts in the spinal cord. As these cysts grow, they destroy the spinal cord from the inside out, potentially causing paralysis if an effective treatment isn't found.
It was after the diagnosis of Syringomyelia that Delilah's neurosurgeon recommended a posterior fossa decompression surgery with duraplasty.
On July 1, 2016, Delilah underwent skull, spine and brain surgery to create more room for her brain, in hopes of restoring normal CSF (cerebrospinal fluid) flow to hopefully halt growth and/or shrink her syrinxes.
In October 2016, we went back for a post-op MRI to see if the surgery helped. We were disappointed to find out that Delilah's syrinxes got even bigger, so the surgery wasn't completely successful. Her neurosurgeon told us to prepare for another major surgery in the near future. At this appointment, she was also diagnosed with craniocervical instability.
We have another MRI scheduled for January 2017 to find out when she will need another surgery. The surgery will be a spinal fusion. Our main concern is that her neurosurgeon does not do this type of surgery, so we may need to seek a neurosurgeon that is not only out of state, but also out of network.
Delilah has a very complex case of Chiari Malformation and not many neurosurgeons are capable of treating all of the conditions that she has.
We also need to meet with a geneticist to check for another rare condition called Ehlers-Danlos Syndrome. We have suspicion that she most likely has this rare connective tissue disorder, considering the fact that craniocervical instability is a hypermobility related syndrome.
Delilah's surgery in July and multiple MRIs have been very expensive and we are still struggling to make ends meet. We have cut as many expenses as we can. I (Delilah's mom) am a full-time nursing student and we are a one income household, with all of the financial responsibilities falling on my husband, Charles.
We appreciate any help that you may give and if you're unable to help, I appreciate your taking the time to learn about Delilah's conditions.
Any money that is raised will go 100% to Delilah's medical bills. We have several thousands of dollars in medical bills from 2016 and with another surgery looming in 2017, we are feeling pretty defeated and helpless.
Please, if you can, try to spread awareness about these conditions and thank you so much for your time. Blessings.
In November 2015, Delilah got a concussion. As worried parents, we took her to the ER after she began vomiting. At the ER, they did a CT scan which revealed that she had a condition called Chiari Malformation. We had never heard of it before and the ER doctor didn't even know how to pronounce it. We left feeling very anxious, not knowing how serious her newly diagnosed condition was.
Our next step was to get a brain MRI to confirm her diagnosis. Shortly after, her diagnosis of Chiari Malformation was confirmed. I did a lot of research and found a neurosurgeon that specialized in Chiari Malformation. We met with him and he ordered yet another round of MRIs including a brain and full-spine MRI.
It was after the brain and full-spine MRI that we found out that not only did Delilah have Chiari Malformation, but she also had Syringomyelia.
Chiari Malformation is a condition where part of your brain is being squished out of the hole in the skull (foramen magnum) and into the spinal cavity. Delilah has an advanced form of Chiari Malformation called Chiari Malformation Type 1.5. Not only is part of Delilah's cerebellum being pushed out of her skull, so is some of her brainstem. This is very scary because your brianstem controls all of your basic life functions such as your heart rate and breathing.
Syringomyelia is a condition where there are fluid filled cysts in the spinal cord. As these cysts grow, they destroy the spinal cord from the inside out, potentially causing paralysis if an effective treatment isn't found.
It was after the diagnosis of Syringomyelia that Delilah's neurosurgeon recommended a posterior fossa decompression surgery with duraplasty.
On July 1, 2016, Delilah underwent skull, spine and brain surgery to create more room for her brain, in hopes of restoring normal CSF (cerebrospinal fluid) flow to hopefully halt growth and/or shrink her syrinxes.
In October 2016, we went back for a post-op MRI to see if the surgery helped. We were disappointed to find out that Delilah's syrinxes got even bigger, so the surgery wasn't completely successful. Her neurosurgeon told us to prepare for another major surgery in the near future. At this appointment, she was also diagnosed with craniocervical instability.
We have another MRI scheduled for January 2017 to find out when she will need another surgery. The surgery will be a spinal fusion. Our main concern is that her neurosurgeon does not do this type of surgery, so we may need to seek a neurosurgeon that is not only out of state, but also out of network.
Delilah has a very complex case of Chiari Malformation and not many neurosurgeons are capable of treating all of the conditions that she has.
We also need to meet with a geneticist to check for another rare condition called Ehlers-Danlos Syndrome. We have suspicion that she most likely has this rare connective tissue disorder, considering the fact that craniocervical instability is a hypermobility related syndrome.
Delilah's surgery in July and multiple MRIs have been very expensive and we are still struggling to make ends meet. We have cut as many expenses as we can. I (Delilah's mom) am a full-time nursing student and we are a one income household, with all of the financial responsibilities falling on my husband, Charles.
We appreciate any help that you may give and if you're unable to help, I appreciate your taking the time to learn about Delilah's conditions.
Any money that is raised will go 100% to Delilah's medical bills. We have several thousands of dollars in medical bills from 2016 and with another surgery looming in 2017, we are feeling pretty defeated and helpless.
Please, if you can, try to spread awareness about these conditions and thank you so much for your time. Blessings.
Organizer
Alyssa Jeanne
Organizer
Neenah, WI
