Kaylee's Journey
Donation protected
Kaylee's Medical Journey
Many people have prayed for Kaylee and asked what exactly has been going on over the past several months. So Chris and I decided we would share Kaylee’s story. Originally we did not want to share anything on social media because it’s not our story, it’s Kaylee’s story. I was also scared it would skew peoples opinions or feelings about her, especially at school, or with other kids. Now I realize that if it skews their opinion of our child then they aren’t nice people to begin with. We also realize we need support. Lots of support. And right now my child is sad and we are emotionally and financially broken after several months of this.
In January 2018 Kaylee looked at me for the first time in her life and said she had a headache. She then became very sick for over a month and her headache lasted over a month. No doctor could figure it out. Not one. But we never gave up! Between January and March she also got strep 2 times and other infections on top of what she already had. She was then diagnosed by a neurologist with autoimmune encephalopathy which is when your body attacks your brain instead of the viruses and infections. Basically the strep and infections caused brain inflammation. She still fights this daily. We still don’t know what made her sick before the strep.
As if that wasn't enough, totally new and different issues were discovered in March 2018 when we got the results of her first brain MRI and we have been heart broken since. We learned she had Chiari 1 Malformation, Retroflexed Odontoid, Basilar Invagination and a cystic space in her left temporal lobe that they couldn’t quite figure out. So back to the MRI machine again. And again. And again. Every 3 months. The cystic space has grown. It has doubled in size. Her Chiari has worsened some. We don’t know how long she will keep getting MRIs every 3 months. Her most recent one was Saturday. Things basically look the same (which is good, all things considered) but now there is more questioning of the cystic space and what it really is, although it doesn't look too ominous. We are currently waiting on more image reviews and more appointments. We also need to visit with other specialists out of state for many of her issues.
As parents we took it upon ourselves to send her imaging all over the United States. I have spoken to world renowned neurosurgeons and Neuro radiologists. I have spoken to St. Jude’s. I have done everything in my power to figure it out. But we still wait. She still suffers with all of the above. Most days you can not tell by looking at her that she is medically complex, she battles through the pain and anxiety as best as she can.
In the middle of all this doctors also found Lyme. And most recently a compromised immune system. She can’t catch a break.
It has been a roller coaster of not so good news one month and then good news another month and so on. I have faith that the coming months and appointments will bring good news. But the last 24 months have taken it's toll on all of us emotionally and financially.
I’ve lost jobs because of Kaylee’s health. Chris has had to downsize his business some. We have lost a lot. We’ve spent our entire life’s savings looking for answers, paying for doctors, paying for bills on little income at times, etc. Insurance doesn’t cover most doctors who treat Lyme and autoimmune encephalopathy (a/k/a PANDAS/PANS). At the strong urging of family and friends her GoFundMe account was started.
I write all this to thank you for your prayers and let you know what we as a family are really going through. Also to remind you to always be kind to people. You never know what is on their heart and what they are going through.
Also thank you to the doctors and staff who are working hard to help Kaylee.
How Can I Get Updates?
We will post updates here and on Facebook. You can also reach out to us for any questions.
How Can I Help Beyond a Donation?
Please share this campaign! Please also pray hard for answers and Kaylee's healing.
Thank You From the Hunsuckers
Thank you in advance for your prayers, monetary contributions, encouraging words and friendships. We have learned that sometimes families really do need community support. We realize things could be much worse and are in fact blessed.
Thank you to our family and friends who have always supported us! We love you all.
Many people have prayed for Kaylee and asked what exactly has been going on over the past several months. So Chris and I decided we would share Kaylee’s story. Originally we did not want to share anything on social media because it’s not our story, it’s Kaylee’s story. I was also scared it would skew peoples opinions or feelings about her, especially at school, or with other kids. Now I realize that if it skews their opinion of our child then they aren’t nice people to begin with. We also realize we need support. Lots of support. And right now my child is sad and we are emotionally and financially broken after several months of this.
In January 2018 Kaylee looked at me for the first time in her life and said she had a headache. She then became very sick for over a month and her headache lasted over a month. No doctor could figure it out. Not one. But we never gave up! Between January and March she also got strep 2 times and other infections on top of what she already had. She was then diagnosed by a neurologist with autoimmune encephalopathy which is when your body attacks your brain instead of the viruses and infections. Basically the strep and infections caused brain inflammation. She still fights this daily. We still don’t know what made her sick before the strep.
As if that wasn't enough, totally new and different issues were discovered in March 2018 when we got the results of her first brain MRI and we have been heart broken since. We learned she had Chiari 1 Malformation, Retroflexed Odontoid, Basilar Invagination and a cystic space in her left temporal lobe that they couldn’t quite figure out. So back to the MRI machine again. And again. And again. Every 3 months. The cystic space has grown. It has doubled in size. Her Chiari has worsened some. We don’t know how long she will keep getting MRIs every 3 months. Her most recent one was Saturday. Things basically look the same (which is good, all things considered) but now there is more questioning of the cystic space and what it really is, although it doesn't look too ominous. We are currently waiting on more image reviews and more appointments. We also need to visit with other specialists out of state for many of her issues.
As parents we took it upon ourselves to send her imaging all over the United States. I have spoken to world renowned neurosurgeons and Neuro radiologists. I have spoken to St. Jude’s. I have done everything in my power to figure it out. But we still wait. She still suffers with all of the above. Most days you can not tell by looking at her that she is medically complex, she battles through the pain and anxiety as best as she can.
In the middle of all this doctors also found Lyme. And most recently a compromised immune system. She can’t catch a break.
It has been a roller coaster of not so good news one month and then good news another month and so on. I have faith that the coming months and appointments will bring good news. But the last 24 months have taken it's toll on all of us emotionally and financially.
I’ve lost jobs because of Kaylee’s health. Chris has had to downsize his business some. We have lost a lot. We’ve spent our entire life’s savings looking for answers, paying for doctors, paying for bills on little income at times, etc. Insurance doesn’t cover most doctors who treat Lyme and autoimmune encephalopathy (a/k/a PANDAS/PANS). At the strong urging of family and friends her GoFundMe account was started.
I write all this to thank you for your prayers and let you know what we as a family are really going through. Also to remind you to always be kind to people. You never know what is on their heart and what they are going through.
Also thank you to the doctors and staff who are working hard to help Kaylee.
How Can I Get Updates?
We will post updates here and on Facebook. You can also reach out to us for any questions.
How Can I Help Beyond a Donation?
Please share this campaign! Please also pray hard for answers and Kaylee's healing.
Thank You From the Hunsuckers
Thank you in advance for your prayers, monetary contributions, encouraging words and friendships. We have learned that sometimes families really do need community support. We realize things could be much worse and are in fact blessed.
Thank you to our family and friends who have always supported us! We love you all.
Organizer
Ashley Travis Hunsucker
Organizer
Stanfield, NC