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Leland Dakota Sammons Roberts

“Never give up” and “This is what Leland says”
Juvenile — CLN3
Birth Date:
 8/23/2006
Location: Huntsville, Ontario, Canada

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Dazlin Alexus Bates

Late Infantile — CLN2
Birth Date:
 10/1/1997
Deceased Date: 8/5/2009
Location: Nashville TN, U.S.

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Ava Noel Short-Gaudet

Late Infantile — CLN2
Birth Date: 12/31/2011 
Deceased Date: 08/30/2017 
Location: Channel-Port aux Basques, Canada

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Frank Valentino Harrison

Juvenile — CLN3
Birth Date: 01/30/1997
Location: Clayton, NC, U.S.

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Bridgette Nicole Harrison

Juvenile — CLN3
Birth Date: 02/19/1991
Location: Clayton, NC, U.S.

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Samuel Engman

Infantile — CLN1
Birth Date: 9/24/2011
Location: Katy, TX, U.S.

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Nathan Jacob Hiltman

Juvenile — CLN3
Birth Date: 3/25/2004
Location: Parker, CO,U.S.

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BDSRA, Connecting Help, Hope and Need

Trina and Bob Rodgers of Boise, Idaho followed a typical path for many couples after meeting and getting married in 2000.  Both born and raised in the Boise Valley, their focus on family and service kept them busy caring for daughters Paige, 11, and Hannah, 9.  Their hours were filled with activities that surrounded the two sisters and their involved and happy school days.  That changed abruptly in 2011, when the family received the devastating news that Hannah had juvenile Batten disease.

In the years since Hannah’s diagnosis, the Rodgers’ have faced enormous challenges in seeking services and providing the best environment they can create for their children.  At several turns they sought out the help of BDSRA to assist with school issues, adjustments, and medical needs.  In their mind, it takes a village to care for a child with Batten disease, and BDSRA is a big part of that village.

“Some of my biggest challenges being a Batten mom is juggling it all,” Trina says. “Trying to keep everyone satisfied and content, while raising a typical child to be a happy, successful adult, while caring for another child who is losing everything.”

“Bob’s biggest challenge is having more patience than he ever thought he could muster.  Paige’s biggest challenge having a sibling with Batten disease has to be that she has had to give up being ‘just a sister’ and become part of the collective family unit caring for a sick child,” Trina notes.  “Hannah’s biggest challenge is feeling like no one likes her and being blind.”

In 2013, the Rodgers’ asked BDSRA for help to work with their school and the teachers who were struggling to meet Hannah’s needs in the classroom.   With no other Batten children in their community,  the staff had few resources to turn to.  “They had never seen anything like Batten before, and they would try techniques they use for kids with autism, or Downs Syndrome, none of which worked,” Trina recalls.

Working with BDSRA, an educational specialist with Batten disease expertise met with the Boise teachers and staff to provide training and techniques for the classroom.  Small changes soon made a huge difference for her daughter.  “She hated school, felt she was dumb, less than the other children.  But since they have been taught how to care for her and make her feel special and creative, school is a much happier place for her now,” Trina says.

“BDSRA has helped us in so many ways, helping us connect to other families going through the same things we are,” she adds. “Knowing we are not the only ones dealing with the side effects of the disease has given me great strength.”

For her family, these links to others working through similar problems has transformed their daily outlook. “Besides bringing a specialist here to educate the school staff, I am most grateful to BDSRA for helping us connect with fellow Batten parents,” Trina says. “No matter how many diseases someone is familiar with, they just can’t understand the daily struggles our family goes through like a fellow Batten parent does,” she notes. “We are a community coming together for our children and the children yet to be diagnosed.”

 

 

 

 

 

 

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Christopher Alain Isnard

Juvenile — CLN3
Birth Date: 11/24/1990
Deceased Date: 9/22/2013
Location: Chester, NJ, U.S.

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Mackenzie Sorah

Infantile – CLN1
Birth Date:
  04/05/2010
Location:  Shakopee, MN, U.S.

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Charlee Marcella Nelson

Late Infantile — CLN2
Birth Date: 01/30/2008
Deceased Date: 03/15/2014
Location: West Jordan, UT, U.S.

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Zeke Holt

Late Infantile – CLN2
Birth Date: 11/19/2009
Deceased Date: 3/23/2014
Location: Toledo, OH, U.S.

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Tristan Shaun Quarmby

Late Infantile – CLN2
Birth Date:
 1/21/1999
Deceased Date: 12/30/2012
Location: Cape Town, South Africa

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Chelsey Worster

Juvenile — CLN3
Birth Date:
 8/6/1995
Deceased Date: 3/21/2013
Location: Lee, ME, U.S.

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Travis Jack Fair

Late Infantile – CLN2
Birth Date:
 5/23/1997
Deceased Date: 3/17/2006
Location: Utah, U.S.

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Ali Vise

Infantile — CLN1
Birth Date: 07/09/2007
Deceased Date: 09/16/2014
Location: Pearcy, AR, U.S.

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Katie Louise Coakley

Late Infantile – CLN2
Birth Date:
 11/19/1986
Deceased Date: 10/26/1993
Location: Salford, Manchester, UK

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Skyler Jordan Rowe

Late Infantile – CLN2
Birth Date:
  04/26/2006
Deceased Date:  03/08/2014
Location:  Argillite, KY, U.S.

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Sophia Grace Crawford

Unknown NCL
Birth Date: 11/17/2011
Deceased Date: 09/17/2014
Location: Lexington, KY, U.S.

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Ethan Michael Davies

Late Infantile – CLN2
Birth Date:
05/13/2008
Deceased Date: 03/14/2013
Location: Lino Lakes, MN, U.S.

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Cameron James Boley

Infantile – CLN1
Birth Date:
  08/25/2007
Deceased Date:  01/08/2017
Location:  Davisville, WV, U.S.

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Airon Henry Boley

Infantile – CLN1
Birth Date: 06/13/2002
Deceased Date: 11/03/2013
Location:  Davisville, WV, U.S.

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Marci E. Hassell

Juvenile – CLN3
Birth Date:  03/14/1991
Deceased Date:  03/09/2013
Location:  Evansdale, IA, U.S.

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