A Tribute to Joshua Potts from his mom
Hello, my name is Jill.
I would like to tell you about my guardian angel, my son, Joshua. He is forever in my heart. Josh was a very courageous, affectionate, and loving child. There was this special sweetness that surrounded him. Josh was one of those people that when he smiled, his eyes would have this amazing incredible sparkle to them. He was a very handsome boy with wavy brown hair and beautiful big brown eyes with the longest and thickest eyelashes, that any woman would envy.
Some of the things he enjoyed doing were riding his bike, playing on the trampoline with his brother and friends, singing, and swimming. Josh won several gold medals at the Special Olympics for his outstanding swimming. His idol was Michael Jordan.
Foremost, Josh loved his family and had such an enormous heart. He inspired me, encouraged me, and was an extraordinary boy. Every night before bed, he wanted me to sing to him “You are my Sunshine”. That was our nightly ritual. Josh gave me so much love in his short life. I miss him more than I could ever express.
Joshua was my middle child. I had 2 other boys, Lawrence who was 14 months older and Luke was 7 yrs younger than Josh. I remember Joshua crying a lot as an infant. Everyone said it was colic. I remember his onesies being so wet actually drenched from him sweating. I did not think this was normal. I talked to the pediatrician who assured me Joshua was healthy. As months went by everyone thought he was such a happy baby, always laughing. However, I did notice his laughter had become a bit odder and seemed inappropriate at times. I thought maybe my little boy was developing a nervous tic.
It was the summer of 1994 when Josh was 5 yrs. old, our lives would change forever. We learned his laughter wasn’t out of joy but he was suffering from gelastic seizures due to a hypothalamic hamartoma. No surgeon wanted to or had the experience to remove it. We tried every type of medication, along with the ketogenic diet, but nothing helped the gelastic seizures. Josh would experience up to 15-25 a day. Some were triggered when he was nervous, sick, or tired. He would have rages, which Josh always felt incredibly terrible afterwards and filled with remorse. He become depressed as well and was put on antidepressants. He was embarrassed by his seizures, which could be very loud. Josh would try and cover his mouth sometimes while he was having one. My heart went out to my innocent child that just wanted to be like everyone else.
The time came when his neurologist said we may want to talk to the Children’s Neurosurgeon at Cleveland Clinic. Joshua’s cognitive thinking was declining and I was told it was only going to get worse. The surgeon agreed to do surgery. Josh was determined to have surgery and his exact words to the surgeon were “I want this thing out of my head”. I just wanted to do what was best for my child, but it turned out to be the most tragic and devastating event in my life – the loss of my very special, sweet son.
Josh was very giving. I knew he would want us to help others who suffered with HH and that is how the Joshua Potts Foundation began.
It was a great blessing the day I came across an ad for Hope for Hypothalamic Hamartomas. Immediately I went to the website and read about the organization. I emailed Erica Webster and received a very quick reply. We talked on the phone. As our conversation progressed, I learned that Erica was a very compassionate and understanding woman. I felt an instant connection. I knew this was meant to happen. I wanted to help this organization.
All those with HH and their families never give up hope. There has been promising new treatments since 1999. I wish you all a healthy and happy future. May God bless you.
A letter from Josh to other children with HH Syndrome
About the Joshua Potts Foundation
The Joshua Potts Foundation was established in June 1999 by Jill and Larry Potts, in loving memory of their 10-year-old son, Joshua, who suffered from Hypothalamic Hamartoma Syndrome.
In June 1999, Joshua underwent surgery to remove his HH. Doctors reported the surgery a success, with between 90 and 95 percent of the tumor removed. However, tragically a short time after his surgery Josh died as a result of complications from brain swelling.
Jill now works tirelessly to help others who suffer from this terrible condition. Joshua has become the Guardian Angel for the HH Community and his spirit lives on through his foundation.
The Joshua Potts Foundation’s goals include raising funding for research, support, and education for the debilitating comorbidities associated with Hypothalamic Hamartoma Syndrome.
We would like to thank the Joshua Potts Foundation for the generous donation of $24,764 which they made during the 2023 International HH Awareness Month. This donation will be used to fund future research and will drive Joshua’s wish of having improved treatments for the gelastic seizures and other comorbidities associated with Hypothalamic Hamartoma Syndrome.
