Hugs with Love
Donation protected
Hugs with Love
My name is Elexi and I am 18 years old and am currently in remission with Crohn’s Disease. However, this was not the case 5 years ago. I became very ill, worsening daily over a 5 month span before I was diagnosed. While Crohn’s Disease is hereditary on the maternal side of my family, it was both devastating and shocking to hear the news that I have Crohn’s. It was particularly hard, as I am the first known female in my family to be diagnosed with the disease and we had lost my uncle to the disease three years prior to my diagnosis. During the best and worst of my illness, giving up was never an option. With the support of my parents, family, friends, and doctors, I kept my head up high and not once lost focus on my academics. I maintained a high grade point average and continued my ballet training throughout the entirety of my flare up.
After being diagnosed in March of 2013, my parents set out on a research kick of their own to learn everything they could about the disease, including holistic approaches with diet and nutrition while maintaining a close partnership with my doctors. Like anyone diagnosed with Crohn’s or any disease, we all were determined to help me enter remission. In August 2013, I successfully entered remission and began the weaning process off my remaining medications, 6mp and Lialda. My remission was soon to be followed by a flare as I entered my freshman year of high school and all the adjustments that went along with it. My medications immediately increased, I was put on daily doses of Imuran and Lialda and luckily my flare was short lived and I was able to enter remission quickly after. With the continued dedication, support, and commitment of my parents, doctors, and the incredible team of researchers I was able to enter remission. I embarked on an Enternal Nutrition Research Diet in March of 2015 and slowly weaned completely off the Imuran. Today, I am not taking any medication nor following a research diet, and doing well.
I consider myself one of the lucky ones, as not all stories of patients share the same story. While some may be similar, there are many others that are not and their path with Crohn’s is much more challenging. For some it’s daily injections of medications, medications failing, operations to remove intestine, and the list continues. I’ll never forget the day and will always hold close to my heart the pediatric ambulatory team who transported me from my local hospital to Children’s and the kangaroo they gave me to keep by my side. It’s the simple love, sentiment and kindness of others who did not know me but who comforted me during a scary time in a then 14 year olds life.
I too want to give back and that I why I am fundraising for what I have started, “Hugs with Love.” The goal of my fundraiser is to team up with California Pacific Medical Center/Lucille Packard Children’s Hospital to provide a Build a Bear to every patient who is admitted to this upcoming holiday season. My ultimate goal is to raise funds continuously so that I can continue donating Build a Bear’s as well as purchasing items that the hospital has on their wish list. While a child may only be there a day, there are others that are there for weeks if not longer. I want to share my heart and love for each of them and the path they are experiencing with unconditional and unending hugs. My hope is that anyone who reads this donates what they can to touch and change the life of a child and to spread the news of my fundraiser as well. Alone we can do little, but together we can do so much!
My name is Elexi and I am 18 years old and am currently in remission with Crohn’s Disease. However, this was not the case 5 years ago. I became very ill, worsening daily over a 5 month span before I was diagnosed. While Crohn’s Disease is hereditary on the maternal side of my family, it was both devastating and shocking to hear the news that I have Crohn’s. It was particularly hard, as I am the first known female in my family to be diagnosed with the disease and we had lost my uncle to the disease three years prior to my diagnosis. During the best and worst of my illness, giving up was never an option. With the support of my parents, family, friends, and doctors, I kept my head up high and not once lost focus on my academics. I maintained a high grade point average and continued my ballet training throughout the entirety of my flare up.
After being diagnosed in March of 2013, my parents set out on a research kick of their own to learn everything they could about the disease, including holistic approaches with diet and nutrition while maintaining a close partnership with my doctors. Like anyone diagnosed with Crohn’s or any disease, we all were determined to help me enter remission. In August 2013, I successfully entered remission and began the weaning process off my remaining medications, 6mp and Lialda. My remission was soon to be followed by a flare as I entered my freshman year of high school and all the adjustments that went along with it. My medications immediately increased, I was put on daily doses of Imuran and Lialda and luckily my flare was short lived and I was able to enter remission quickly after. With the continued dedication, support, and commitment of my parents, doctors, and the incredible team of researchers I was able to enter remission. I embarked on an Enternal Nutrition Research Diet in March of 2015 and slowly weaned completely off the Imuran. Today, I am not taking any medication nor following a research diet, and doing well.
I consider myself one of the lucky ones, as not all stories of patients share the same story. While some may be similar, there are many others that are not and their path with Crohn’s is much more challenging. For some it’s daily injections of medications, medications failing, operations to remove intestine, and the list continues. I’ll never forget the day and will always hold close to my heart the pediatric ambulatory team who transported me from my local hospital to Children’s and the kangaroo they gave me to keep by my side. It’s the simple love, sentiment and kindness of others who did not know me but who comforted me during a scary time in a then 14 year olds life.
I too want to give back and that I why I am fundraising for what I have started, “Hugs with Love.” The goal of my fundraiser is to team up with California Pacific Medical Center/Lucille Packard Children’s Hospital to provide a Build a Bear to every patient who is admitted to this upcoming holiday season. My ultimate goal is to raise funds continuously so that I can continue donating Build a Bear’s as well as purchasing items that the hospital has on their wish list. While a child may only be there a day, there are others that are there for weeks if not longer. I want to share my heart and love for each of them and the path they are experiencing with unconditional and unending hugs. My hope is that anyone who reads this donates what they can to touch and change the life of a child and to spread the news of my fundraiser as well. Alone we can do little, but together we can do so much!
Organizer
Elexi Kourtoglou
Organizer
Burlingame, CA
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