I was a baby when Rhonda came onto my life, so I don’t remember when I met her, but she was my first BFF. Growing up with Rhonda had a profound effect on my life, my personality, and my heart.
Hi! I’m Sarah from Leicester, England. I was diagnosed as an adult, in 2016, with Lobar HPE an Rhombencephalosynapsis. I love to sing and was honoured to be contacted by Leslie from Families for HoPE and asked if I would like to record a song for all of our HoPE children and their loved ones. …
Written by Roxanne Steele Growing up in Indiana in the 1970’s and 80’s, I have to admit I never encountered many people who were different. Yes different races and economic factors but not anyone with any real disability.
As I walked into the conference center that Sunday night in 2018, seeing all those kiddos–some I recognized, many I didn’t–but, it felt like I was home with “my people”.
Written by Pete Lawler While I’m preparing to complete the 2020 conference registration for Dorothy and I, we were talking about last year’s event. 2018 was my second conference. The first was in 2008 when Chloe was a baby, and I learned so much about HPE and about my granddaughter. Like a lot of families, …
Guest Authors
Blog posts written by members of our HPE family
My friend, Rhonda
November 30, 2019
By Leslie, Sammy's mom
I was a baby when Rhonda came onto my life, so I don’t remember when I met her, but she was my first BFF. Growing up with Rhonda had a profound effect on my life, my personality, and my heart.
Share the HoPE in Holoprosecephaly
Colors of HoPE
October 24, 2019
By CharlieDawns momma
Hi! I’m Sarah from Leicester, England. I was diagnosed as an adult, in 2016, with Lobar HPE an Rhombencephalosynapsis. I love to sing and was honoured to be contacted by Leslie from Families for HoPE and asked if I would like to record a song for all of our HoPE children and their loved ones. …
Share the HoPE in Holoprosecephaly
Roxanne Steele
July 22, 2019
By CharlieDawns momma
Written by Roxanne Steele Growing up in Indiana in the 1970’s and 80’s, I have to admit I never encountered many people who were different. Yes different races and economic factors but not anyone with any real disability.
Share the HoPE in Holoprosecephaly
Alone No More
July 19, 2019
By CharlieDawns momma
As I walked into the conference center that Sunday night in 2018, seeing all those kiddos–some I recognized, many I didn’t–but, it felt like I was home with “my people”.
Grandparents View
June 12, 2019
By CharlieDawns momma
Written by Pete Lawler While I’m preparing to complete the 2020 conference registration for Dorothy and I, we were talking about last year’s event. 2018 was my second conference. The first was in 2008 when Chloe was a baby, and I learned so much about HPE and about my granddaughter. Like a lot of families, …
Share the HoPE in Holoprosecephaly
Words
March 29, 2019
By CharlieDawns momma
By: Kelli Aardal Goin Words she never got to say, However communicated in a big way.
Share the HoPE in Holoprosecephaly