"Endurance and Perseverance: The Story of Ava Garnett. A Brother's Perspective"
By John Garnett
Life with my sister Ava has been very inspirational. We are only a little over twelve months apart in age and she is honestly my best friend. Growing up, whenever Ava and I used to play, she would ask me to reach for things that she could not; such as getting a toy from under the couch, or to reach something that was up high. Over time, I learned to accommodate Ava and to try my best to make her feel as comfortable as possible.
Being born with Nail Patella Syndrome (NPS), Ava had and continues to go to Shriners Hospital in Philadelphia, to see orthopedic doctors, as well as occupational and physical therapists several times a year. She also needs to monitor her kidney function through visits to a nephrologist at NYU. The first couple of times she went, Ava came back with splints of some sort to try and extend her arm little by little, overtime.
Whenever Ava would fall asleep, she would complain about how the splints were uncomfortable and painful. Currently, she often has joint pain and needs to make a conscious effort to make sure that she exercises and eats healthy. Hearing about her experiences over the years and seeing first hand her journey living with NPS has heightened my interest in a future career as a doctor or surgeon. I am interested in helping individuals with extremely rare conditions, like Ava.
Ava has been through many obstacles, without complaining. With each and every challenge, she faces them with ease. Even with sports, she has learned to adapt and refuses to say, “I can’t do it.” She has been on many teams such as basketball, soccer and currently plays fast pitch softball. My sister puts 110% into everything that she does. Having her as a big sister has helped me realize that doubt and negative thoughts are all mental. I know that each day my sister has a choice to either sulk about challenges that she has, or to make a choice to try and always find something to be positive about…to look on the bright side. Thinking positively can change the whole trajectory of your life. When there is a will, there is a way. I see that from the examples that my sister has shown me.
In school, Ava has put so much effort into spreading awareness about rare diseases, especially in highlighting World Rare Disease Day. Through her efforts in talking to students, staff, elected officials and various organizations, I have seen first hand what a trailblazer truly is. Her efforts in advocacy have not only changed her life, but it has also significantly shifted my thoughts, as well as every single person that she has met. She truly is an example of the quote by Mahatma Gandhi: “Be the change you wish to see in the world.”
With Ava as my sister, I believe that I have changed for the better over the span of my life so far. I have learned to be more selfless, and to think more of others. I have realized to never judge a book by its cover because you never know what someone is going through. Lastly, through all of the years as a youngster hearing Ava say, “I can do it” if we asked if she needed help, Ava has taught me how to be courageous and independent. Her legacy is still growing, and I am so blessed to be her little brother.
By John Garnett
Life with my sister Ava has been very inspirational. We are only a little over twelve months apart in age and she is honestly my best friend. Growing up, whenever Ava and I used to play, she would ask me to reach for things that she could not; such as getting a toy from under the couch, or to reach something that was up high. Over time, I learned to accommodate Ava and to try my best to make her feel as comfortable as possible.
Being born with Nail Patella Syndrome (NPS), Ava had and continues to go to Shriners Hospital in Philadelphia, to see orthopedic doctors, as well as occupational and physical therapists several times a year. She also needs to monitor her kidney function through visits to a nephrologist at NYU. The first couple of times she went, Ava came back with splints of some sort to try and extend her arm little by little, overtime.
Whenever Ava would fall asleep, she would complain about how the splints were uncomfortable and painful. Currently, she often has joint pain and needs to make a conscious effort to make sure that she exercises and eats healthy. Hearing about her experiences over the years and seeing first hand her journey living with NPS has heightened my interest in a future career as a doctor or surgeon. I am interested in helping individuals with extremely rare conditions, like Ava.
Ava has been through many obstacles, without complaining. With each and every challenge, she faces them with ease. Even with sports, she has learned to adapt and refuses to say, “I can’t do it.” She has been on many teams such as basketball, soccer and currently plays fast pitch softball. My sister puts 110% into everything that she does. Having her as a big sister has helped me realize that doubt and negative thoughts are all mental. I know that each day my sister has a choice to either sulk about challenges that she has, or to make a choice to try and always find something to be positive about…to look on the bright side. Thinking positively can change the whole trajectory of your life. When there is a will, there is a way. I see that from the examples that my sister has shown me.
In school, Ava has put so much effort into spreading awareness about rare diseases, especially in highlighting World Rare Disease Day. Through her efforts in talking to students, staff, elected officials and various organizations, I have seen first hand what a trailblazer truly is. Her efforts in advocacy have not only changed her life, but it has also significantly shifted my thoughts, as well as every single person that she has met. She truly is an example of the quote by Mahatma Gandhi: “Be the change you wish to see in the world.”
With Ava as my sister, I believe that I have changed for the better over the span of my life so far. I have learned to be more selfless, and to think more of others. I have realized to never judge a book by its cover because you never know what someone is going through. Lastly, through all of the years as a youngster hearing Ava say, “I can do it” if we asked if she needed help, Ava has taught me how to be courageous and independent. Her legacy is still growing, and I am so blessed to be her little brother.
This story has been published in partnership with the organization, Don't Hide It, Flaunt It.
Siblings with a Mission is a non-profit, international organization established to serve and support siblings of individuals with complex health conditions and developmental disabilities. All images are found on Google images and are solely used for educational purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support.
