Olivia
Enfield, New Hampshire
|
Hello. My name is Olivia Elizabeth Guziewicz. I am 19 years old. I was diagnosed with Glut1 just before my 10th Birthday. It took almost a decade, and moving from Connecticut to New Hampshire before a doctor finally properly diagnosed me. If not for my neurologist Dr. Richard P. Morse at Dartmouth Hitchcock Medical Center and Dr. Darryl C. De Vivo, I probably would not be doing as well in life as I am today.
Glut1 affects me mostly with seizures. I am on the Modified Ketogenic diet and take anti-epileptic medications as well. I use a wheelchair for safe mobility and independence on days when I have seizures, hot days and on marathon shopping days. As I have grown, and through OT and PT my balance and ataxia have improved tremendously . I do pretty well in school. I walked with my 2017 graduation class in June, I will continue in school until I am 21. I live in Enfield, New Hampshire with my family. I have a goal of living in an apartment by the time I am 25. |
I enjoy many activities such as swimming, running and horseback riding. I participate with Unified Skiing in the winter. Initially I was in a ski sled I now ski independently. I also play basketball on two different Unified Basketball Teams. I would say that of all the sports I participate in, I excel in swimming and basketball.
I love all animals, however dogs and horses are my favorite. I have a Carin Terrier named Piper. One day I hope to have a horse. My family is working on getting me a seizure dog.
I have some amazing friends, and my family and I are always doing something or going somewhere. I am very excited to attend the Glut1 conference in Nashville. It will be nice to see other individuals with Glut1 again. I have not seen them since the Illinois and Kentucky conferences.
I look forward to seeing you all soon!
I love all animals, however dogs and horses are my favorite. I have a Carin Terrier named Piper. One day I hope to have a horse. My family is working on getting me a seizure dog.
I have some amazing friends, and my family and I are always doing something or going somewhere. I am very excited to attend the Glut1 conference in Nashville. It will be nice to see other individuals with Glut1 again. I have not seen them since the Illinois and Kentucky conferences.
I look forward to seeing you all soon!
update 2019
Hello to all my Glut 1 friends - this is Olivia. I wanted to update all of you with what has been going on in my life over the past two years.
In June of 2017 I walked with my 2017 graduating class. I returned to school in the Fall at the Regional Resource Center (RRC)to complete my education there. It is a specialized school that integrates life skills with academics. I continued swimming, plaing basketball and skiing. I also continued with my intership at a local thrift shop.
In the Fall of 2017 the Modified Atkins Diet stopped working for me. I was having seizures all the time and was using my wheelchair all the time. The seizures became so bad that I was hospitalized. i spent a week in the hospital where we started the Ketogenic Diet again. It was amazing, my seizures were just about gone in only a week. I did so well that the wheelchair was a thing of the past. My Ataxia is gone and my balance is greatly improved. My independance is probably the best thing that has happened now that the seizures are under control.
In June of 2018 I graduated from the RRC and had the summer off to just have fun. Over the summer I applied for a work study program called Project Search. Three hundred students applied, I was one of abut 13 that were selected. It was a very proud moment for me and my parents.
In August 2018 I began my work study program at Project Search. By the time I graduate from the program in June 2019 I will have completed 3 to 4 different roations, Ophthalmology, Pediatrics, Dietary and Radiology. I will also have worked on my interviewing skills and general skills required to have gainful employment. I would not have been able to be successful or even be accepted into this program if my seizures were not under control. The Ketogenic Diet in its TRUE form has enabled me to achieve many goals I have set for myself.
In September of 2018 my G-Tube was removed. It has been in place for 10 years. I now have two belly buttons! I remain mostly seizure free. I have some small breakthrough seizures if I drink more liquids than I am suppose to or have more caffeine than usual (I LOVE coffee).
In February 2019 I turned 21!!!! We had a party and I ordered a Dirty Grey Goose Martini with NO Vermouth. We got the green light from my Keto Dietitian I just had to take 20mls of MCT afterward...no seizures. A success!
I am in my last rotation at Project Search and I look forward to graduating in June of 2019. I will also receive a REAL 100% High School Diploma. This is HUGE! It will help with my employ-ability. I plan on taking a pet grooming class over the summer where I will receive a Certificate as a Pet Groomer.
i hope to get a part time job and also start taking riding lessons again over the summer. Maybe take a belly dance class and catch some concerts. We have a summer music series at local parks here in New Hampshire that are amazing. We live in the Lakes Region of New Hampshire so I will be out on my Kayak as much as possible this summer as well.
I am living my best life. It has been a struggle to get here, sometimes it still is. I am at the point in my life where having a partner would be nice. But I have amazing friends and family and I have a full life - it will happen when it happens :)
I look forward to seeing all of you in July at the DC Conference.
Olivia
In June of 2017 I walked with my 2017 graduating class. I returned to school in the Fall at the Regional Resource Center (RRC)to complete my education there. It is a specialized school that integrates life skills with academics. I continued swimming, plaing basketball and skiing. I also continued with my intership at a local thrift shop.
In the Fall of 2017 the Modified Atkins Diet stopped working for me. I was having seizures all the time and was using my wheelchair all the time. The seizures became so bad that I was hospitalized. i spent a week in the hospital where we started the Ketogenic Diet again. It was amazing, my seizures were just about gone in only a week. I did so well that the wheelchair was a thing of the past. My Ataxia is gone and my balance is greatly improved. My independance is probably the best thing that has happened now that the seizures are under control.
In June of 2018 I graduated from the RRC and had the summer off to just have fun. Over the summer I applied for a work study program called Project Search. Three hundred students applied, I was one of abut 13 that were selected. It was a very proud moment for me and my parents.
In August 2018 I began my work study program at Project Search. By the time I graduate from the program in June 2019 I will have completed 3 to 4 different roations, Ophthalmology, Pediatrics, Dietary and Radiology. I will also have worked on my interviewing skills and general skills required to have gainful employment. I would not have been able to be successful or even be accepted into this program if my seizures were not under control. The Ketogenic Diet in its TRUE form has enabled me to achieve many goals I have set for myself.
In September of 2018 my G-Tube was removed. It has been in place for 10 years. I now have two belly buttons! I remain mostly seizure free. I have some small breakthrough seizures if I drink more liquids than I am suppose to or have more caffeine than usual (I LOVE coffee).
In February 2019 I turned 21!!!! We had a party and I ordered a Dirty Grey Goose Martini with NO Vermouth. We got the green light from my Keto Dietitian I just had to take 20mls of MCT afterward...no seizures. A success!
I am in my last rotation at Project Search and I look forward to graduating in June of 2019. I will also receive a REAL 100% High School Diploma. This is HUGE! It will help with my employ-ability. I plan on taking a pet grooming class over the summer where I will receive a Certificate as a Pet Groomer.
i hope to get a part time job and also start taking riding lessons again over the summer. Maybe take a belly dance class and catch some concerts. We have a summer music series at local parks here in New Hampshire that are amazing. We live in the Lakes Region of New Hampshire so I will be out on my Kayak as much as possible this summer as well.
I am living my best life. It has been a struggle to get here, sometimes it still is. I am at the point in my life where having a partner would be nice. But I have amazing friends and family and I have a full life - it will happen when it happens :)
I look forward to seeing all of you in July at the DC Conference.
Olivia
|
|
|
|
|
|
|
|
|
|
|
|
