#Skylee’sFight!
Donation protected
Skylee’s Story:
Skylee was born a beautiful healthy baby girl, then at 3 months of age she started having infantile spasms, these are considered catastrophic seizures because they happen at such a young and crucial age for brain development therefore they can cause a lot of damage........and they did! The devastation of those first couple of weeks she spent in the hospital having seizure after seizure was immense. How could this be happening to our baby girl and why can’t they make it stop!! There were no answers as to why they started or what was causing them but They finally did get them to stop by starting injections of ACTH which is like a steroid. They sent us home shortly after with these injections that had to be administered at home by me....one injection jabbed into her thigh muscle twice a day. One of the hardest things I have ever had to do to my own child! It didn’t take long and she wasn’t even flinching for the injections anymore in fact she had become very blank in the days to follow, no more smiles, no more sounds just laying there quite staring at the ceiling and her face swelled up terribly. Finally the injections were done after a month and then we could see the damage left behind. She was getting close to 6 months old at this point and clearly delayed! She was also suffering with terrible reflux and spitting up a lot. Then about a month or so later she started to have seizures again only these were different then before so the neurologist began to add medications and increase medications for months we were in and out of the hospital and it was not helping! Finally we decided to make a dramatic move,we gave up everything we had worked so hard for to move back to our Home state of MD and get her into John Hopkins Childrens hospital. When we got there she was diagnosed with Lennox-Gastaut Syndrome a seizure disorder that consists of multiple types of uncontrollable seizures and severe cognitive delays. At that point she was still on many medications and was then brought into the hospital and started on the ketogenic diet to help control seizures. She ended up having a severe liver reaction to the meds and was in icu for 2 weeks, we were once again devastated at the site of our baby girl having to endure so much and fight for her life! After she recovered from that the diet did start to work for about 6 months and then they returned again, we have been trying to gain seizure control ever since. During her time on the diet when she wasn’t having seizures we returned back to NC to try to rebuild our lives again. Since returning she still continues to battle daily seizures, she has been in and out of the hospital more times then I care to recall, she got to a point where she was unable to hold food down anymore and was given a feeding tube so she can no longer eat by mouth, she still loves food and will eat ANYTHING you put near her mouth but if she eats she will throw it all back up with no answers as to why?? She also had a VNS magnet implanted in her chest to try to control seizures......it to has failed :( We have been to many specialists and have tried many medications, we never seem to get any real answers or real solutions that truly help our sweet baby girl. I have prayed a lot through all of this and I’m sure that’s where the strength to endure and to keep fighting comes from! Skylee is such a fighter and that to helps me to keep fighting for her! We have recently come into contact with a specialist that was referred to us by a friend who sees him as well and he has helped her tremendously. This specialist takes more of a natural approach to medical issues, he looks at the body as a whole and finds out where the inflammation is, what organs are not functioning as they should, what toxins maybe contributing to the problems she is having, what important nutrients is her body and brain not absorbing he finds real answers through lots of tests and then he begins to treat each problem that he finds. This dr has many degrees and awards and has helped many people and comes highly recommended. This is exciting to me because for once I feel like someone is going to look for and treat the root causes of her medical issues instead of just throwing more and more medications at her and hoping one works! This is where you and this go fund me page comes in.....Taking Skylee to see this Dr, the tests and treatments are not covered by her insurance :( I am asking for some help to raise enough money to cover the plan of treatment that he has given me that includes his time, diagnostics and treatment. This plan gives us a new glimmer of hope that Skylee may be able to do some real healing and become healthier as a result! Our hope is that this treatment will stop the seizures and start to repair her brain, that her gut will heal and she will be able to eat again by mouth instead of a tube in her stomach and who knows we may even see her gain some cognitive function! So please help us if you can every little bit helps and please keep us in your thoughts and prayers as we begin this next chapter in #Skylee’sFight!
Skylee was born a beautiful healthy baby girl, then at 3 months of age she started having infantile spasms, these are considered catastrophic seizures because they happen at such a young and crucial age for brain development therefore they can cause a lot of damage........and they did! The devastation of those first couple of weeks she spent in the hospital having seizure after seizure was immense. How could this be happening to our baby girl and why can’t they make it stop!! There were no answers as to why they started or what was causing them but They finally did get them to stop by starting injections of ACTH which is like a steroid. They sent us home shortly after with these injections that had to be administered at home by me....one injection jabbed into her thigh muscle twice a day. One of the hardest things I have ever had to do to my own child! It didn’t take long and she wasn’t even flinching for the injections anymore in fact she had become very blank in the days to follow, no more smiles, no more sounds just laying there quite staring at the ceiling and her face swelled up terribly. Finally the injections were done after a month and then we could see the damage left behind. She was getting close to 6 months old at this point and clearly delayed! She was also suffering with terrible reflux and spitting up a lot. Then about a month or so later she started to have seizures again only these were different then before so the neurologist began to add medications and increase medications for months we were in and out of the hospital and it was not helping! Finally we decided to make a dramatic move,we gave up everything we had worked so hard for to move back to our Home state of MD and get her into John Hopkins Childrens hospital. When we got there she was diagnosed with Lennox-Gastaut Syndrome a seizure disorder that consists of multiple types of uncontrollable seizures and severe cognitive delays. At that point she was still on many medications and was then brought into the hospital and started on the ketogenic diet to help control seizures. She ended up having a severe liver reaction to the meds and was in icu for 2 weeks, we were once again devastated at the site of our baby girl having to endure so much and fight for her life! After she recovered from that the diet did start to work for about 6 months and then they returned again, we have been trying to gain seizure control ever since. During her time on the diet when she wasn’t having seizures we returned back to NC to try to rebuild our lives again. Since returning she still continues to battle daily seizures, she has been in and out of the hospital more times then I care to recall, she got to a point where she was unable to hold food down anymore and was given a feeding tube so she can no longer eat by mouth, she still loves food and will eat ANYTHING you put near her mouth but if she eats she will throw it all back up with no answers as to why?? She also had a VNS magnet implanted in her chest to try to control seizures......it to has failed :( We have been to many specialists and have tried many medications, we never seem to get any real answers or real solutions that truly help our sweet baby girl. I have prayed a lot through all of this and I’m sure that’s where the strength to endure and to keep fighting comes from! Skylee is such a fighter and that to helps me to keep fighting for her! We have recently come into contact with a specialist that was referred to us by a friend who sees him as well and he has helped her tremendously. This specialist takes more of a natural approach to medical issues, he looks at the body as a whole and finds out where the inflammation is, what organs are not functioning as they should, what toxins maybe contributing to the problems she is having, what important nutrients is her body and brain not absorbing he finds real answers through lots of tests and then he begins to treat each problem that he finds. This dr has many degrees and awards and has helped many people and comes highly recommended. This is exciting to me because for once I feel like someone is going to look for and treat the root causes of her medical issues instead of just throwing more and more medications at her and hoping one works! This is where you and this go fund me page comes in.....Taking Skylee to see this Dr, the tests and treatments are not covered by her insurance :( I am asking for some help to raise enough money to cover the plan of treatment that he has given me that includes his time, diagnostics and treatment. This plan gives us a new glimmer of hope that Skylee may be able to do some real healing and become healthier as a result! Our hope is that this treatment will stop the seizures and start to repair her brain, that her gut will heal and she will be able to eat again by mouth instead of a tube in her stomach and who knows we may even see her gain some cognitive function! So please help us if you can every little bit helps and please keep us in your thoughts and prayers as we begin this next chapter in #Skylee’sFight!
Organizer
Linda Styles Sauers
Organizer
Morganton, NC
