Lets give Savannah hope!
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I'm Brian, and this is my niece Savannah.
She is a bright, beautiful, and cheerful girl. On February 15, 2015 her life changed. She woke up smiling, sat down to breakfast and her body started jerking uncontrollably. The violent tics left her head jerking to the left, her eyes rolling back in her head, her hands and arms twisting and turning. This didn’t stop Savannah. She went to school no matter what and fought her body as much as she could throughout the day. Even in her sleep her limbs and head did not rest.
In the area she lives in doctors were unable to figure out what was wrong resulting in her travelling from New York to Cleveland Clinic in April. She was admitted to the hospital and spent a week being videotaped and monitored to rule out seizures. Although they did not find any seizures at that time they did record 12 different muscle tics and spasms in her head, face and neck. She had an MRI to rule out tumors and aneurysms. It was then a neurologist diagnosed her with PANDAS ( a strep infection in her brain). Savannah was never diagnosed with a strep infection but that doesn’t stop it from attacking through your nose and into the brain. (http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispandas/) . Treatment for PANDAS is controversial and expensive and insurance does not cover a majority of the costs. The bill for this stay was over $30,000 and insurance only paid half of it. Despite missing a lot of school Savannah kept up with her grades and left the first grade reading 3rd grade level and her Math tested out at 2nd grade level.
Savannah was put on medication and monitored by Cleveland Clinic from June to August. There are several treatments for PANDAS and Savannah, always smiling and joking learned how to take her pills and make a game out of it. During the summer she ended up having the medicine to control the tics, tremors and muscle spasms increased almost on a monthly level to try to slow down them down Despite everything she is going through she keeps going. She is a competitive Cheerleader and her team won first place in the competition in October. She has to watch being in crowds and in school if Strep is around as it make her symptoms worse. She is a Brownie and takes part in as much activities as she can. In November 2015 we took her to New Jersey to confirm her diagnosis with Dr. Rosario Trifiletti (http://www.site.neurokidsr.us/ ) an expert in this condition. In order to see this doctor, $800.00 was required for him to see her. Insurance reimbursed $70.00 of that cost. Dr. Trifiletti ordered 35 blood tests and Savannah endured over 24 vials of blood taken in two appointments from this little girl. Half of that blood work was covered and it was discovered she had a Mycoplasma Infection that required her to be on two antibiotics as well as the medication to calm down her muscle spasms and tics. They were hoping it would help with infection but that didn’t happen. Cleveland Clinic does not treat PANDAS so we took her to another doctor in Cleveland who specializes in treating this condition.
Now she sees Dr. Jan Kriwinsky in Ohio that has confirmed her diagnosis. He did more blood work during her first appointment in January of this year. The results were crazy. She had had MONO in the last 18 months - We never saw that coming. She also tested positive for LYME disease. She just spent a month on medication for that. She still shows Mycoplasma antibodies fighting that it seems. Some of her IGg levels are low now. But Savannah still got up every day, got on the school bus and tried her best to act like nothing was different, just another day in her life. But things started to get to her. She started getting tired after lunch. She started to forget the simplest things and couldn’t focus in school. Her teacher let her Grandmother know Savannah was starting to change.
On March 2, 2016 it was decided Savannah would only go half a day to give her body a chance to rest. She would complete her school work at home during the late afternoon and early evening. That last until March 10th when something happened that didn’t fit the bill.
(From an email from her teacher) Around 10:30 the class had just returned from art. They were about to begin a math activity. Savannah all of a sudden slipped from her chair and slid to the floor (her back was leaning against the chair) with her arms and fits clenched up. She was stiff but also shaking. She was crying and whimpering. The teacher tried to talk to her to see if she could hear her and she did not respond. After about 2-3 minutes of trying to talk and smooth her, her teacher asked her again if she could open her eyes. She finally slowly opened her eyes and was very scared and confused…
So now Savannah is home. Still working. She does her school work and emails it to her teacher!! She is learning how to use shortcuts in Word, attach her homework after it is scanned in an email.. despite everything. She doesn’t stop… It’s just getting a little hard for her to fight her way.
She has had to go through a tremendous amount of medical treatment in order to treat what seems to be untreatable. This condition is starting to take a toll on this happy little girl. She gets angry at her body and will have rages that she can’t stop it. She tells us she wants her brain “fixed” so she can be normal again. She has endured test after test, medicines that made her sick to her stomach always hoping it would work, always hoping and smiling. Recently she started to develop seizures in school and is now back home. Savannah, being the fighter she, has learned how to scan her homework and email it back to her teacher. This 8 year old is fighting this mysterious condition to win.
Our family and her grandparents have endured incredible medical bills, hotel bills (Ronald McDonald House in Cleveland is constantly full and they have only been able to stay there 3 times for the 7 out of state trips), major car repairs to keep driving the 4 hour trip one way, - anything it takes in order to seek out the treatment required for this. She has three siblings living with her under the age of 13. This has taken a toll on them too but as a family unit, these four musketeers stick together no matter what.
On March the 16th of this year she will finally have her IVIG treatment (http://pandasnetwork.org/understandingpandaspans/treatment/ivig/ ). This required my mother, her grandmother to pay $9,000 to pay for the treatment and will have a $2,500 balance to pay the doctor’s fee. We won’t know if it works for 4-6 months and Savannah might have to have another one after that.
HOPE is their answer, LOVE is their KEY and her ANGELS are watching over her and pushing her forward, fighting something that showed up unannounced and uninvited and changed her life completely.
Your contributions will be used to provide treatment, hotel rooms, transportation and medical related expenses to help Savannah get better. will be donated to a charitable foundation related to the research and treatment of PANDAS.
Our family and Savannah will be incredibly thankful for your donations.
She is a bright, beautiful, and cheerful girl. On February 15, 2015 her life changed. She woke up smiling, sat down to breakfast and her body started jerking uncontrollably. The violent tics left her head jerking to the left, her eyes rolling back in her head, her hands and arms twisting and turning. This didn’t stop Savannah. She went to school no matter what and fought her body as much as she could throughout the day. Even in her sleep her limbs and head did not rest.
In the area she lives in doctors were unable to figure out what was wrong resulting in her travelling from New York to Cleveland Clinic in April. She was admitted to the hospital and spent a week being videotaped and monitored to rule out seizures. Although they did not find any seizures at that time they did record 12 different muscle tics and spasms in her head, face and neck. She had an MRI to rule out tumors and aneurysms. It was then a neurologist diagnosed her with PANDAS ( a strep infection in her brain). Savannah was never diagnosed with a strep infection but that doesn’t stop it from attacking through your nose and into the brain. (http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispandas/) . Treatment for PANDAS is controversial and expensive and insurance does not cover a majority of the costs. The bill for this stay was over $30,000 and insurance only paid half of it. Despite missing a lot of school Savannah kept up with her grades and left the first grade reading 3rd grade level and her Math tested out at 2nd grade level.
Savannah was put on medication and monitored by Cleveland Clinic from June to August. There are several treatments for PANDAS and Savannah, always smiling and joking learned how to take her pills and make a game out of it. During the summer she ended up having the medicine to control the tics, tremors and muscle spasms increased almost on a monthly level to try to slow down them down Despite everything she is going through she keeps going. She is a competitive Cheerleader and her team won first place in the competition in October. She has to watch being in crowds and in school if Strep is around as it make her symptoms worse. She is a Brownie and takes part in as much activities as she can. In November 2015 we took her to New Jersey to confirm her diagnosis with Dr. Rosario Trifiletti (http://www.site.neurokidsr.us/ ) an expert in this condition. In order to see this doctor, $800.00 was required for him to see her. Insurance reimbursed $70.00 of that cost. Dr. Trifiletti ordered 35 blood tests and Savannah endured over 24 vials of blood taken in two appointments from this little girl. Half of that blood work was covered and it was discovered she had a Mycoplasma Infection that required her to be on two antibiotics as well as the medication to calm down her muscle spasms and tics. They were hoping it would help with infection but that didn’t happen. Cleveland Clinic does not treat PANDAS so we took her to another doctor in Cleveland who specializes in treating this condition.
Now she sees Dr. Jan Kriwinsky in Ohio that has confirmed her diagnosis. He did more blood work during her first appointment in January of this year. The results were crazy. She had had MONO in the last 18 months - We never saw that coming. She also tested positive for LYME disease. She just spent a month on medication for that. She still shows Mycoplasma antibodies fighting that it seems. Some of her IGg levels are low now. But Savannah still got up every day, got on the school bus and tried her best to act like nothing was different, just another day in her life. But things started to get to her. She started getting tired after lunch. She started to forget the simplest things and couldn’t focus in school. Her teacher let her Grandmother know Savannah was starting to change.
On March 2, 2016 it was decided Savannah would only go half a day to give her body a chance to rest. She would complete her school work at home during the late afternoon and early evening. That last until March 10th when something happened that didn’t fit the bill.
(From an email from her teacher) Around 10:30 the class had just returned from art. They were about to begin a math activity. Savannah all of a sudden slipped from her chair and slid to the floor (her back was leaning against the chair) with her arms and fits clenched up. She was stiff but also shaking. She was crying and whimpering. The teacher tried to talk to her to see if she could hear her and she did not respond. After about 2-3 minutes of trying to talk and smooth her, her teacher asked her again if she could open her eyes. She finally slowly opened her eyes and was very scared and confused…
So now Savannah is home. Still working. She does her school work and emails it to her teacher!! She is learning how to use shortcuts in Word, attach her homework after it is scanned in an email.. despite everything. She doesn’t stop… It’s just getting a little hard for her to fight her way.
She has had to go through a tremendous amount of medical treatment in order to treat what seems to be untreatable. This condition is starting to take a toll on this happy little girl. She gets angry at her body and will have rages that she can’t stop it. She tells us she wants her brain “fixed” so she can be normal again. She has endured test after test, medicines that made her sick to her stomach always hoping it would work, always hoping and smiling. Recently she started to develop seizures in school and is now back home. Savannah, being the fighter she, has learned how to scan her homework and email it back to her teacher. This 8 year old is fighting this mysterious condition to win.
Our family and her grandparents have endured incredible medical bills, hotel bills (Ronald McDonald House in Cleveland is constantly full and they have only been able to stay there 3 times for the 7 out of state trips), major car repairs to keep driving the 4 hour trip one way, - anything it takes in order to seek out the treatment required for this. She has three siblings living with her under the age of 13. This has taken a toll on them too but as a family unit, these four musketeers stick together no matter what.
On March the 16th of this year she will finally have her IVIG treatment (http://pandasnetwork.org/understandingpandaspans/treatment/ivig/ ). This required my mother, her grandmother to pay $9,000 to pay for the treatment and will have a $2,500 balance to pay the doctor’s fee. We won’t know if it works for 4-6 months and Savannah might have to have another one after that.
HOPE is their answer, LOVE is their KEY and her ANGELS are watching over her and pushing her forward, fighting something that showed up unannounced and uninvited and changed her life completely.
Your contributions will be used to provide treatment, hotel rooms, transportation and medical related expenses to help Savannah get better. will be donated to a charitable foundation related to the research and treatment of PANDAS.
Our family and Savannah will be incredibly thankful for your donations.
Organizer
Brian P. Heick
Organizer
Bergen, NY