PRISMS Blog Guidelines
My name is Julia Hetherington and I live in Beaufort, SC. My daughter is Rachel, born in 1994, and diagnosed with SMS at 8 years old. I have been a PRISMS member for 17 years. I served on the PRISMS board of directors for many years and am now looking forward to serving as the SC representative.
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My name is Maria and I live in Boise, ID. I am a mom to 4 boys including an almost 2 year old SMS angel boy named Hunter, a bright and loving little guy, who loves snuggles and tickles, his big brothers and his iPad. Hunter was born July of 2017, we received his diagnosis at 9 weeks old in September 2017, this was a true blessing because it has helped us prepare and understand the many challenges we have experienced since the day he was born. I learned about PRISMS the day we received Hunter’s diagnosis but, I did not become a member until 2018 when I learned about the membership.
PRISMS has been a wealth of information and support for me since Hunter’s diagnosis. I want to represent PRISMS because I know what is it like being in the situation of learning that your child has SMS. It can be scary and at times feel lonely, and I want to be a person of support, someone parents can reach out to to help find information or professionals in the area, as well as emotional support.
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My name is Caitlin Seldon, and I am the Regional Representative for Michigan. I am an elementary teacher turned stay at home mother for two beautiful daughters, Robin (9/11/2014) and Avery (9/29/2016). My husband and I live in Highland, where my husband works as a mechanical engineer at the General Motors Proving Grounds. Robin was diagnosed with Smith-Magenis Syndrome on October 31st, 2016 at 2 years old. We became members of PRISMS immediately following Robin’s diagnosis and have found the resources extremely useful. My husband and I attended our first conference in Pittsburgh last year. After attending the conference, I had a strong desire to become more involved in our community.
As Regional Representative, my hope is to provide emotional support and educational resources to newly diagnosed families. I am still learning how to navigate life with a child with Smith-Magenis Syndrome, but I would love to provide a shoulder to cry on and offer hope to anyone that may need it. I would also love to get local families together in an informal setting where everyone feels comfortable and has the ability to make connections. Please feel free to contact me at anytime!
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My name is Ron Dixon and I live in Bettendorf, Iowa. My son Joshua, goes by Josh, was born in 1995 and was diagnosed with SMS at age 16. I have been a member of PRISMS since 2013. I decided to volunteer as a regional representative as a way to give back to the SMS family who helped us obtain a diagnosis and learn how to best advocate for Josh while giving him space to have ownership of his life to the greatest extent reasonable. I grew up in Iowa and know that it can be a bit of a challenge to obtain regular medical services let alone all the support for diagnosing and learning to thrive with a child with a rare disorder and we hope to help bridge that gap at least a little bit. The picture is Josh with his best friend Mason.
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I feel honored to be a part of PRISMS! My name is Rhonda Lowney and I represent Arizona. My daughter Jude was diagnosed at the age of two and I believe I have been a member of PRISMS ever since, the geneticist that gave us our diagnosis told us about PRISMS when she gave us the news and I don’t really know how we would’ve made it through the SMS diagnosis and life without PRISMS. The support from the organization, the conferences, and the connection with the other parents have been a life saver, both mentally and physically. I hope to help any newly diagnosed families in my area with any emotional and practical support available and I also hope to deepen the connection between the already diagnosed families that live here in our state. I am hoping that my seventeen years’ experience as a parent along with the amazing support of PRISMS will enable me to be of service!
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As you may or may not know, we live in a remote part of southwest Colorado. Ali, our daughter, age 30 (4/11/1988) lives in the town of Grand Junction and we live about 120 miles from there in the town of Norwood. We are very close to the four corners area and about a 6.5 hour drive from Denver.
Ali was born at St. Mary’s Hospital in Grand Junction. While still in the hospital, we sent a DNA sample to University Hospital, in Denver, for a genetic work up. Ann Smith was working there at the time and two weeks later we received the news that Ali was missing a part of her 17th chromosome. There were only seven case studies on this disorder at the time and PRISMS was still about five years away from being formed. We knew so little at the time and I often wonder what it would have been like if we had had the PRISMS community to help us in those early days.
We met Ann Smith and Maggie Miller when Ali was about three and attended the very first PRISMS conference in Washington DC in 1998. We have attended four conferences since then, meeting other parents and individuals with SMS. The community of people we’ve met through PRIRMS has enriched our lives beyond measure and helped us feel a little less alone as we travel this challenging path of parenting an SMS individual. We consider the PRISMS family our “tribe” and are humbled by the love we feel from this group.
I am now at a position in my life where I can give back to this wonderful community. Its been a long and challenging journey with Ali but I feel blessed to be her mother. I would love to be able to help other parents by being a good listener and pointing them towards the resources they might need. I can especially relate to those who live in remote/rural areas.
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Callihan joined the PRISMS team as a Regional Representative for New York in September 2018. She’s very familiar with Smith-Magenis Syndrome. Her older sister, Briahna who is 28, was diagnosed with the disorder at 11 years old. Callihan and her family then turned to PRISMS conferences to get a quick education so they could mold their life to best fit Briahna’s needs. Conferences showed them that they weren’t alone in the world when it came to seeking help, so Bri could live the best life possible.
17 years later, they still go to conferences to make sure they’re up to date on any new developments. Callihan has been a caretaker for her sister since age 12. Bri went to her prom, she also went up to her college and stayed in the dorms. It’s very important to Callihan that her sister gets to experience the same joys in life that she does. Callihan has 26 years of experience growing up with her sister. She knows her sister’s needs and she knows how to be her sister’s voice, and she wants to do the same for other families in Central New York. She received education through PRISMS, and she’s excited to share that experience with families across her region.
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I’m Carissa Le, from Lakeville, MN (30 miles south of the Twin Cities). My daughter, Scarlet, is 11 years old. She was diagnosed at 16 months in September of 2008. I’ve been a member of PRISMS for a few years and have attended the last 2 international conferences. When my daughter was tested for SMS, my mom found the PRISMS website and shared it with me. My jaw dropped as I found “twins” from all over the world in pictures on the site. I knew SMS was the diagnosis before the testing was even complete. I’ve used the website and those I’ve met thru online boards to help me as questions arise.
I can be of assistance to others in my area by leading them to PRISMS, giving them pamphlets and other literature, and hosting get-togethers.
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My name is Ashton Chermaine and I am representing South Louisiana and the Gulf Coast. My child is Krista and she is 29 and was born in 1989. She was diagnosed in October 2000. I have been affiliated with PRISMS for over 15 years. PRISMS has provided a vast amount of education and resources that has helped our daughter lead a productive life. I have 30 years of experience raising a SMS child and feel that I can provide a comforting voice of experience.
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My name is John Roseborough and I am the regional representative for Kansas. My daughter Elsie was born in 2012 and was diagnosed at age 3. I have been affiliated with PRISMS since 2016, soon after my daughter was diagnosed with SMS. PRISMS has been a source of information as well as a supportive community. I’ve gained so much learning from the publications and two conferences I’ve attended to date, and I’ve made many friends through the organization who have helped us come to terms with the diagnosis and helped us on the SMS journey.
My hope is to serve others in the community by being available as a point of contact for anyone diagnosed. I can share the resources that have helped us. My wife Joanna and I can connect families with ourselves or others who can provide empathy and if requested, guidance on things we or others have some experience with. We want to help others as there are so many uncertainties and challenges (and at times, joys) that come with the SMS diagnosis. We see a need for families in Kansas to meet up face to face periodically (establish more frequent social connections), and perhaps we can help with fundraising for PRISMS too!
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