Adelaide's Medical Fund
Donation protected
Adelaide….Our strong Chiari Warrior!!!!
Thank you for taking the time to read all about me and my many struggles.
My name is Adelaide and I am 5 years old. By looking at me you would never be able to tell that Im a little
different on the inside than most children my age. A year ago I would have said that Im not so very different.
But in the last year my families world has turned upside down.
We had just moved to El Paso in October 2015 and were settling in and then in November everything began
to change. I remember coughing an awful lot and having a hard time breathing. Mommy took me into the doctor three different times and on the third visit they finally did an Xray of my lungs.
After the X-Ray I could see that there was something really worrying my mommy and she told me we had to go right to the hospital and stay there for a little while. It turns out that was a mass in my lungs and they didn't know what it was. After lots of testing and a lung biopsy they discovered I had a rare lung infection called actinomycosis. Thankfully its easy to treat with
penicillin but I did have to have a PICC in my arm for a long time so mommy could give me IV medicine. (The Military wouldn't pay for a nurse to come do the IV... Thank God my mommie new how!) But there is a good part, after 18 months of being away they let my daddy come home and be with us because I was so sick. I wasn't able to go to school or do much of anything with a PICC in my arm and I hated having the dressing changes but I was strong because my mommy was with me. Thats what I always tell her.
On January 26th I turned 5 and I was playing with balloons in our living room. Not paying attention to where I was going I ran right into the corner of the TV stand with my head and had to have sticthes. It wasn't too big of a deal at the time just a long ER visit but within two months of hitting my head I started having a lot of scary problems.
In March My PICC finally came out after 5 months!!!! I just had to continue taking it by mouth and it didn't taste very good but I did it. Shortly after it came out I start having what mama calls Neurological problems. I would lose my balance, sleep a lot, my eyes weren't working right, my ears weren't working right, I started getting really bad headaches and my legs and arms were
always tired. My mommy took me to a bunch of different doctors and most of them said I was fine and just having migraines. But she didn't believe them and she was so scared that my lung infection decided to go to my brain. We had an EEG and it shows I have absent seizures but
that still didn't explain all my symtoms. So my mommy and daddy kept pushing forward and fighting to find the truth and finally, in April, a dr listened in . He did a brain MRI and found my Chiari Malformation. Soon after we were heading to Phoenix from El Paso. (there are no
pediatric Neurosurgeons in El Paso). The Dr there explained a lot to my mommy and daddy and made my mommy cry. My mommy said that they have to fix an owie in the back of my head because after hitting my head I made my Chiari worse (we didn't even know I had it) and thats why the symptoms started. It turns out that my Skull is too small for my brain and so it hanging down into the area of my spinal cord causing compression and blocking the flow from my brain. They scheduled my surgery for two weeks later. I remember my mommy scared to let me do anything for those two weeks.
She was told that any kind of head jarring accident
would make me a quadriplegic. So we were very careful.
On May 17th we went to the hospital in Phoenix for my surgery. My mommy and daddy were so
tough so I was too. They said that the dr is going to help us and fix it. The dr did just that. She
removed the bottom part of my brain, the top part of C1 and made the hole in my skull a little bigger. I stayed in the hospital with mommy and daddy by my side for 5 days.
I slept for the first 3 and had lots of pain. I did get to see the service dogs though. They all came to visit and I
have to say that that was my favorite part.
When I got home I was still very tired and sore. I rested a lot. I was feeling better until 2 weeks after the surgery and then I was in a lot of pain again. Mommy said I got chemical meningitis and that the medication the dr gave us would help. And it did. I felt great and was doing well
after that was gone. So excited to get ready for kindergarten!!! I felt like a regular little girl
again. But unfortunately, knowing i was getting better,Daddy had to leave us again on June
28th. He's military and is gone a lot. But he will be home again soon I hope. We really miss him!
On July 19th all of a sudden my symptoms came back and some new ones came with them. I told mommy my eyes were going wonky and I dont think she knew what to say. She just kinda froze and then came and held me and cried….. My mommy had thought it was all better. I
thought it was all better. But it is not. We have had some testing since then and my brain shows that the flow is better but I am still struggling on a daily basis. I am tired, my head hurts, my legs and arms are tired, my eyes don't
always do what they should nor do my ears, and Im developing sensory problems on top of my
many absent seizures a day.
The only dr we have here in El Paso, our neurologist, is leaving us. She says after she is gone we will have to travel to Phoenix or Albuquerque to see a pediatric neurologist on top of having to go to phoenix to see our neurosurgeon. Both my specialist are asking the military to allow us to move closer to specialists that can take care of me medically. We are hoping they approve it. My mommy and daddy are trying to do whats best for me. After everything we have been through this last year we need some good news!!!
With this move coming up there are a lot of expenses and my grandma is setting this account up for me so people can help if they would like to. I know we appreciate it so very much. My mommy and daddy never really ask for any help and they do okay. But now with another move in less than a year things haven't been as easy. Any donated money will go towards my needs
and our families needs. We need to find a school that will work with my speical needs and public schools will not do that. They want me to attend full time and with my seizures and medical issues I can not do this. Please donate if you can. If you cant please keep us in your prayers!
As her grandmother….her momo….I sit here and cry as I write this for her. I Cry because one
year ago she was so vibrant and full of life. Nothing could stop her.
And now its been one things after another slowing her down. But Her chiari will not stop her. She keeps smiling
through the pain. Such a giving and sweet little girl! She's tougher than most adults I know. I
ask that if you can donate please do. Any little amount will help more than you know!!!! We
love our little buttercup and only want the best for her but expenses are adding up for them and
they could use a little help. If you can't give at this time, please put buttercup in your prayers. With loving thoughts and prayers may God Bless the road you and your family travels...
Thank you for taking the time to read all about me and my many struggles.
My name is Adelaide and I am 5 years old. By looking at me you would never be able to tell that Im a little
different on the inside than most children my age. A year ago I would have said that Im not so very different.
But in the last year my families world has turned upside down.
We had just moved to El Paso in October 2015 and were settling in and then in November everything began
to change. I remember coughing an awful lot and having a hard time breathing. Mommy took me into the doctor three different times and on the third visit they finally did an Xray of my lungs.
After the X-Ray I could see that there was something really worrying my mommy and she told me we had to go right to the hospital and stay there for a little while. It turns out that was a mass in my lungs and they didn't know what it was. After lots of testing and a lung biopsy they discovered I had a rare lung infection called actinomycosis. Thankfully its easy to treat with
penicillin but I did have to have a PICC in my arm for a long time so mommy could give me IV medicine. (The Military wouldn't pay for a nurse to come do the IV... Thank God my mommie new how!) But there is a good part, after 18 months of being away they let my daddy come home and be with us because I was so sick. I wasn't able to go to school or do much of anything with a PICC in my arm and I hated having the dressing changes but I was strong because my mommy was with me. Thats what I always tell her.
On January 26th I turned 5 and I was playing with balloons in our living room. Not paying attention to where I was going I ran right into the corner of the TV stand with my head and had to have sticthes. It wasn't too big of a deal at the time just a long ER visit but within two months of hitting my head I started having a lot of scary problems.
In March My PICC finally came out after 5 months!!!! I just had to continue taking it by mouth and it didn't taste very good but I did it. Shortly after it came out I start having what mama calls Neurological problems. I would lose my balance, sleep a lot, my eyes weren't working right, my ears weren't working right, I started getting really bad headaches and my legs and arms were
always tired. My mommy took me to a bunch of different doctors and most of them said I was fine and just having migraines. But she didn't believe them and she was so scared that my lung infection decided to go to my brain. We had an EEG and it shows I have absent seizures but
that still didn't explain all my symtoms. So my mommy and daddy kept pushing forward and fighting to find the truth and finally, in April, a dr listened in . He did a brain MRI and found my Chiari Malformation. Soon after we were heading to Phoenix from El Paso. (there are no
pediatric Neurosurgeons in El Paso). The Dr there explained a lot to my mommy and daddy and made my mommy cry. My mommy said that they have to fix an owie in the back of my head because after hitting my head I made my Chiari worse (we didn't even know I had it) and thats why the symptoms started. It turns out that my Skull is too small for my brain and so it hanging down into the area of my spinal cord causing compression and blocking the flow from my brain. They scheduled my surgery for two weeks later. I remember my mommy scared to let me do anything for those two weeks.
She was told that any kind of head jarring accident
would make me a quadriplegic. So we were very careful.
On May 17th we went to the hospital in Phoenix for my surgery. My mommy and daddy were so
tough so I was too. They said that the dr is going to help us and fix it. The dr did just that. She
removed the bottom part of my brain, the top part of C1 and made the hole in my skull a little bigger. I stayed in the hospital with mommy and daddy by my side for 5 days.
I slept for the first 3 and had lots of pain. I did get to see the service dogs though. They all came to visit and I
have to say that that was my favorite part.
When I got home I was still very tired and sore. I rested a lot. I was feeling better until 2 weeks after the surgery and then I was in a lot of pain again. Mommy said I got chemical meningitis and that the medication the dr gave us would help. And it did. I felt great and was doing well
after that was gone. So excited to get ready for kindergarten!!! I felt like a regular little girl
again. But unfortunately, knowing i was getting better,Daddy had to leave us again on June
28th. He's military and is gone a lot. But he will be home again soon I hope. We really miss him!
On July 19th all of a sudden my symptoms came back and some new ones came with them. I told mommy my eyes were going wonky and I dont think she knew what to say. She just kinda froze and then came and held me and cried….. My mommy had thought it was all better. I
thought it was all better. But it is not. We have had some testing since then and my brain shows that the flow is better but I am still struggling on a daily basis. I am tired, my head hurts, my legs and arms are tired, my eyes don't
always do what they should nor do my ears, and Im developing sensory problems on top of my
many absent seizures a day.
The only dr we have here in El Paso, our neurologist, is leaving us. She says after she is gone we will have to travel to Phoenix or Albuquerque to see a pediatric neurologist on top of having to go to phoenix to see our neurosurgeon. Both my specialist are asking the military to allow us to move closer to specialists that can take care of me medically. We are hoping they approve it. My mommy and daddy are trying to do whats best for me. After everything we have been through this last year we need some good news!!!
With this move coming up there are a lot of expenses and my grandma is setting this account up for me so people can help if they would like to. I know we appreciate it so very much. My mommy and daddy never really ask for any help and they do okay. But now with another move in less than a year things haven't been as easy. Any donated money will go towards my needs
and our families needs. We need to find a school that will work with my speical needs and public schools will not do that. They want me to attend full time and with my seizures and medical issues I can not do this. Please donate if you can. If you cant please keep us in your prayers!
As her grandmother….her momo….I sit here and cry as I write this for her. I Cry because one
year ago she was so vibrant and full of life. Nothing could stop her.
And now its been one things after another slowing her down. But Her chiari will not stop her. She keeps smiling
through the pain. Such a giving and sweet little girl! She's tougher than most adults I know. I
ask that if you can donate please do. Any little amount will help more than you know!!!! We
love our little buttercup and only want the best for her but expenses are adding up for them and
they could use a little help. If you can't give at this time, please put buttercup in your prayers. With loving thoughts and prayers may God Bless the road you and your family travels...
Organizer and beneficiary
Cheryl Schwartz
Organizer
Middleville, MI
Nicole Koenig
Beneficiary