Daughter with Spina Bifida
Donation protected
If you need any more info on sydney please feel free to email me at [email redacted]Back in 1994 I was blessed with the sweetest baby girl anyone could imagine. She was born with a head of dark hair (always wanted a baby with lots of hair). She was born via c-section. I was awake and aware and finally heard them finishing up. I couldn't hear my baby. The room got silent. I went into panic mode. I was screaming "what's wrong with my baby, can someone please tell me what's wrong with my baby?" Finally a nurse came over and said "I'm sorry sweetie looks like your baby has Spina Bifida." What on earth is Spina Bifida? And why does my baby girl have it? She was rushed away and taken to a hospital an hour away in Jacksonville. I was alone. I didn't have my baby. I didn't get to feed her or bond with her the first minutes of her life. This killed my soul. Within 2 hours she was having her first surgery. I didn't sleep that night. Even pumped with medication for the pain from my surgery, I didn't sleep. I stayed awake staring at the wall praying desperately for my baby to be safe. I felt so helpless. I couldn't get up and go be with her. I wasn't able to be there for her. I was a very broken woman.
Within a week she was having another surgery to put in a shunt to drain the excess spinal fluid that was filling her head. This one was the scariest. And the saddest because they had to shave that beautiful head of hair. Finally after 3 weeks she was able to come home.
After a year of taking care of a child with special needs her father left. He could not handle it. To this day we have not seen him. She has gotten not one birthday card, Christmas card, nothing. He left me to take care of her by myself. Which proved to be one the most challenging things you could imagine. I struggled with keeping a job because I missed so many days with her being sick that no one wanted to keep me. See I was her nurse. I had to cath her every 4 hours. I was her mom her dad her nurse and her friend. I had no family to help at all. There were days I had to beg churches and food banks just so we could eat. I had to drop out of college. My life was and is my daughter, and I’m ok with that.
Over the years she had many things happen to her because of the Spina Bifida. She lost a kidney when she was six due to constant infection. When she was 10 she developed Chirari Malformation, which is the scariest one because they had to go in and take part of her skull out to make room for her brain that was in a sense sagging into her spinal column. She had three more surgeries after that, all with just me to comfort her. If you have ever had your child have surgery you know the worst part is keeping it together saying "I will see you soon, promise!!" just as they are about to wheel her into the OR.
Over the years we continued to struggle. Just her and I trying to keep each other sane. She would continue to be sick with bladder and kidney infections. But by the time she turned 11 she developed a breathing problem.
Now this was about 5 months after we moved back to Fernandina from Georgia. The next day I made an appointment for her.
She went to the pulmonologist and they did the routine test. They came to the conclusion that she had asthma. So they gave her the normal meds, Advair and Albuterol. She felt a little better for a short period but never really recovered. We kept going through this. I would take her to the doc with the same issues. Not being able to take a full breath and sounding like she was basically drowning in her own mucus. So the docs would just say "she's not doing the medicine right" and just kept pumping her with prednisone and the other meds. She would only get better when she was on prednisone. Which this medicine for her is not good. Because of her already weakened immune system. This kept going on. She saw about 8 different specialist and countless regular docs. Not to mention the docs she would see with each hospital stay. I would tell them this is NOT asthma. My brother has asthma and I know how it acts. This isn't asthma. They would not listen to me at all. Matter of fact I even had a few docs just laugh at me.
In 2012 I took her to another specialist who did a CT scan on her (finally someone listened to me) The first words out of his mouth were "this is NOT asthma, this is worse". As horrible as those words were I was so happy that finally someone listened to me and did more test. So from that he continued to do more test. He did a test for CF which came back borderline but not CF. He did allergy test that came back an allergy to mold and dust. But finally after all the test he kinda looked at me confused. He says this is really odd because we really don't know what it is but that it’s definitely not asthma. She would be a good test subject. So we went home defeated. With nothing to help her.
They finally put a pic line in her which I had to change every 6 hours. This horror didn't help her either. By this time her life has become a nightmare. She struggles to breath. Most days she can't even walk from the head of her bed to the foot of her bed without struggling to breath. Her breathing has gotten so bad that she had to drop out of school. Her life is sitting in her bedroom. Dark, alone and scared. She doesn't sleep during the night because she is truly afraid of dying in her sleep. She does not go out with friends. She doesn't have a boyfriend. She doesn't get to go out for meals with me. Her life is her phone.
However over the last month we have noticed that when she leaves the apartment she kinda feels better. She tells me her breathing seems better and her chest doesn't seem as tight. Now when she told me that I started to think:
She's allergic to mold and dust
The apartment that we live in is very old
The carpet is 15 years old and they refuse to replace.
We can actually see mold coming out of the ceiling.
My brother who lives in a different state and has asthma can't even set foot into my apartment without having an asthma attack.
A few other neighbors have complained of breathing issues one so bad she started coughing up blood, but to get better when she moved out.
With these facts and the fact that she gets a bit better when we leave makes me come up with one conclusion.
With her Spina Bifida causing her to have a lower immune system and the other medical issues she has, the mold and the dust in that apartment affect her breathing. So bad to the point that she wants me to drive her around in the car just so she can have a moment of breathing better. Also her breathing seems to get better once we are out of this town away from all the fungus and two factories within 3 miles of us.
I have complained to the landlord and they just tell me to spray bleach on it. This will do nothing because I am pretty sure it's in there deep. I have asked them to change the carpet and they will as long as I take everything out of there. With working and taking care of her I just don't have time to loud up a U-Haul. They refuse to do it one room at a time. Now I'm sure I could take this to my local Health Department and they would more than likely shut the place down, but I don’t think I have time to wait for that. There are so many issues with mold that they will not do anything about.
So my fundraiser is to move us out of there. I really feel with all the evidence that her life will completely turn around.
Not only is her mental health an issue here but how long can she stay in that mold infested place before it really does her harm. It already has because the docs tell me her lungs have actually grown larger due to this.
I am at the end of my rope. I feel so helpless, alone and afraid. I check on her during the day just to make sure she's breathing. This is no life for her. So I'm asking if you could help out at all we would be so grateful. I just don't know where else to turn. I have to get her out of that apartment as soon as possible. She’s 19 now and would really like to be able to start college after she gets her GED but until she can get better she can’t.
Thank you so much for your time and consideration. God Bless
Cyndi and Sydney
Within a week she was having another surgery to put in a shunt to drain the excess spinal fluid that was filling her head. This one was the scariest. And the saddest because they had to shave that beautiful head of hair. Finally after 3 weeks she was able to come home.
After a year of taking care of a child with special needs her father left. He could not handle it. To this day we have not seen him. She has gotten not one birthday card, Christmas card, nothing. He left me to take care of her by myself. Which proved to be one the most challenging things you could imagine. I struggled with keeping a job because I missed so many days with her being sick that no one wanted to keep me. See I was her nurse. I had to cath her every 4 hours. I was her mom her dad her nurse and her friend. I had no family to help at all. There were days I had to beg churches and food banks just so we could eat. I had to drop out of college. My life was and is my daughter, and I’m ok with that.
Over the years she had many things happen to her because of the Spina Bifida. She lost a kidney when she was six due to constant infection. When she was 10 she developed Chirari Malformation, which is the scariest one because they had to go in and take part of her skull out to make room for her brain that was in a sense sagging into her spinal column. She had three more surgeries after that, all with just me to comfort her. If you have ever had your child have surgery you know the worst part is keeping it together saying "I will see you soon, promise!!" just as they are about to wheel her into the OR.
Over the years we continued to struggle. Just her and I trying to keep each other sane. She would continue to be sick with bladder and kidney infections. But by the time she turned 11 she developed a breathing problem.
Now this was about 5 months after we moved back to Fernandina from Georgia. The next day I made an appointment for her.
She went to the pulmonologist and they did the routine test. They came to the conclusion that she had asthma. So they gave her the normal meds, Advair and Albuterol. She felt a little better for a short period but never really recovered. We kept going through this. I would take her to the doc with the same issues. Not being able to take a full breath and sounding like she was basically drowning in her own mucus. So the docs would just say "she's not doing the medicine right" and just kept pumping her with prednisone and the other meds. She would only get better when she was on prednisone. Which this medicine for her is not good. Because of her already weakened immune system. This kept going on. She saw about 8 different specialist and countless regular docs. Not to mention the docs she would see with each hospital stay. I would tell them this is NOT asthma. My brother has asthma and I know how it acts. This isn't asthma. They would not listen to me at all. Matter of fact I even had a few docs just laugh at me.
In 2012 I took her to another specialist who did a CT scan on her (finally someone listened to me) The first words out of his mouth were "this is NOT asthma, this is worse". As horrible as those words were I was so happy that finally someone listened to me and did more test. So from that he continued to do more test. He did a test for CF which came back borderline but not CF. He did allergy test that came back an allergy to mold and dust. But finally after all the test he kinda looked at me confused. He says this is really odd because we really don't know what it is but that it’s definitely not asthma. She would be a good test subject. So we went home defeated. With nothing to help her.
They finally put a pic line in her which I had to change every 6 hours. This horror didn't help her either. By this time her life has become a nightmare. She struggles to breath. Most days she can't even walk from the head of her bed to the foot of her bed without struggling to breath. Her breathing has gotten so bad that she had to drop out of school. Her life is sitting in her bedroom. Dark, alone and scared. She doesn't sleep during the night because she is truly afraid of dying in her sleep. She does not go out with friends. She doesn't have a boyfriend. She doesn't get to go out for meals with me. Her life is her phone.
However over the last month we have noticed that when she leaves the apartment she kinda feels better. She tells me her breathing seems better and her chest doesn't seem as tight. Now when she told me that I started to think:
She's allergic to mold and dust
The apartment that we live in is very old
The carpet is 15 years old and they refuse to replace.
We can actually see mold coming out of the ceiling.
My brother who lives in a different state and has asthma can't even set foot into my apartment without having an asthma attack.
A few other neighbors have complained of breathing issues one so bad she started coughing up blood, but to get better when she moved out.
With these facts and the fact that she gets a bit better when we leave makes me come up with one conclusion.
With her Spina Bifida causing her to have a lower immune system and the other medical issues she has, the mold and the dust in that apartment affect her breathing. So bad to the point that she wants me to drive her around in the car just so she can have a moment of breathing better. Also her breathing seems to get better once we are out of this town away from all the fungus and two factories within 3 miles of us.
I have complained to the landlord and they just tell me to spray bleach on it. This will do nothing because I am pretty sure it's in there deep. I have asked them to change the carpet and they will as long as I take everything out of there. With working and taking care of her I just don't have time to loud up a U-Haul. They refuse to do it one room at a time. Now I'm sure I could take this to my local Health Department and they would more than likely shut the place down, but I don’t think I have time to wait for that. There are so many issues with mold that they will not do anything about.
So my fundraiser is to move us out of there. I really feel with all the evidence that her life will completely turn around.
Not only is her mental health an issue here but how long can she stay in that mold infested place before it really does her harm. It already has because the docs tell me her lungs have actually grown larger due to this.
I am at the end of my rope. I feel so helpless, alone and afraid. I check on her during the day just to make sure she's breathing. This is no life for her. So I'm asking if you could help out at all we would be so grateful. I just don't know where else to turn. I have to get her out of that apartment as soon as possible. She’s 19 now and would really like to be able to start college after she gets her GED but until she can get better she can’t.
Thank you so much for your time and consideration. God Bless
Cyndi and Sydney
Organizer
Cyndi Sleigh
Organizer
Fernandina Beach, FL
