Interactive photo gallery: Utah kids with epilepsy await cannabis oil

Leah Hogsten | The Salt Lake Tribune
Terisa Sitton has a wish that every 16-year-old has and that's to drive a car. Terisa has on average three seizures a day.

Leah Hogsten | The Salt Lake Tribune
Alexander Park, 10, has hundreds of seizures in day from Lennox-Gasteaut Syndrome. "We have tried everything available and nothing has worked," said his mother Marina Alexandrescu.

Leah Hogsten | The Salt Lake Tribune
Porter Holmes, 6, has a constant companion in Thumper, his service dog of one year to help with his seizures stemming from Dravet syndrome.

Leah Hogsten | The Salt Lake Tribune
Isaac Sintz, 7, suffers from acute renal failure due to the medications he takes for Dravet syndrome, that cause him "cognitive delay, physical harm and mental and emotional harm." Isaac has 5-6 absence seizures, 2-3 myoclonic jerks and 1-2 tonic clonic seizures daily.

Leah Hogsten | The Salt Lake Tribune
"Many days Amelia is unable to function," said her mother Karen Glenn. Amelia Glenn, 19, suffers "dozens to thousands" of seizures, according to Karen, stemming from Dravet syndrome.

Leah Hogsten | The Salt Lake Tribune
l-r Jessie Christensen, 13, and Kimmie Hansen, 15, have recently become friends through functions held by families involved in the Dravet Syndrome support group. Kimmie loves to tickle Jessie and make her laugh.

Leah Hogsten | The Salt Lake Tribune
"We would love to meet our son for the first time without being on several seizure medications," said Katie Nelson of her son Payton Nelson, age 9. "He started meds at 10-days-old and has never been off them." Payton has intractable epilepsy and atypical dravet syndrome.

Leah Hogsten | The Salt Lake Tribune
Isabelle Knowlton, 9, is allergic to 70% of all seizure medications. Her mother Syndi Knowlton fears that if Isabelle, or Izzie, begins to have cluster seizures, the only choice might be to induce a coma to stop them. Izzie has Rett Syndrome and Angelman Syndrome.

Leah Hogsten | The Salt Lake Tribune
"Alepsia would allow Addy to function normally and stop the current developmental and learning delays she currently experiences," said Rebecca Hyer. Addison Hyer, 7, has Lennox-Gastaut Syndrome.

Leah Hogsten | The Salt Lake Tribune
Charley Grossman, 7, rarely leaves home without her Spongebob Squarepants stuffed doll. Charley, the youngest of four siblings has Intractable Epilepsy and seizes multiple times every day.

Leah Hogsten | The Salt Lake Tribune
Connor Campbell, 6, receives much love and understanding from his older sister, Katie, age 11, in managing his Intractable Epilepsy and the more than 100 seizures he has daily.

Leah Hogsten | The Salt Lake Tribune
Anavey Jensen, 7, has many generalized absence and tonic clonic seizures, although the cause is unknown. Anavey complains that her current medications "make her head feel strange," Friday, December 27, 2013.

Leah Hogsten | The Salt Lake Tribune
Glenn David Maughan, 11, more affectionately known as "Bug", was every bit a great big brother before he began suffering seizures from intractable epilepsy due to a cerebral folate deficiency. "To run outside, to climb and ride bikes like he used to- having him enjoy those things again- would be a miracle that would bring all our family back," said his mother Annette Maughan.

Leah Hogsten | The Salt Lake Tribune
Holden Cromar, 6, has complex partial seizures and focal onset seizures that last up to 50 minutes stemming from intractable epilepsy. In an effort to get the care he needs, including the drug Alepsia, he and his family moved to Colorado Springs, CO in December 2013.

Leah Hogsten | The Salt Lake Tribune
Cutler Henrie, 7, is the oldest of three siblings. Cutler suffers one to three seizures a day, lasting up to 15 minutes each from cortical dysplasia.

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Leah Hogsten | The Salt Lake Tribune Terisa Sitton has a wish that every 16-year-old has and that's to drive a car. Terisa has on average three seizures a day. Leah Hogsten | The Salt Lake Tribune Alexander Park, 10, has hundreds of seizures in day from Lennox-Gasteaut Syndrome. "We have tried everything available and nothing has worked," said his mother Marina Alexandrescu. Leah Hogsten | The Salt Lake Tribune Porter Holmes, 6, has a constant companion in Thumper, his service dog of one year to help with his seizures stemming from Dravet syndrome. Leah Hogsten | The Salt Lake Tribune Isaac Sintz, 7, suffers from acute renal failure due to the medications he takes for Dravet syndrome, that cause him "cognitive delay, physical harm and mental and emotional harm." Isaac has 5-6 absence seizures, 2-3 myoclonic jerks and 1-2 tonic clonic seizures daily. Leah Hogsten | The Salt Lake Tribune "Many days Amelia is unable to function," said her mother Karen Glenn. Amelia Glenn, 19, suffers "dozens to thousands" of seizures, according to Karen, stemming from Dravet syndrome. Leah Hogsten | The Salt Lake Tribune l-r Jessie Christensen, 13, and Kimmie Hansen, 15, have recently become friends through functions held by families involved in the Dravet Syndrome support group. Kimmie loves to tickle Jessie and make her laugh. Leah Hogsten | The Salt Lake Tribune "We would love to meet our son for the first time without being on several seizure medications," said Katie Nelson of her son Payton Nelson, age 9. "He started meds at 10-days-old and has never been off them." Payton has intractable epilepsy and atypical dravet syndrome. Leah Hogsten | The Salt Lake Tribune Isabelle Knowlton, 9, is allergic to 70% of all seizure medications. Her mother Syndi Knowlton fears that if Isabelle, or Izzie, begins to have cluster seizures, the only choice might be to induce a coma to stop them. Izzie has Rett Syndrome and Angelman Syndrome. Leah Hogsten | The Salt Lake Tribune "Alepsia would allow Addy to function normally and stop the current developmental and learning delays she currently experiences," said Rebecca Hyer. Addison Hyer, 7, has Lennox-Gastaut Syndrome. Leah Hogsten | The Salt Lake Tribune Charley Grossman, 7, rarely leaves home without her Spongebob Squarepants stuffed doll. Charley, the youngest of four siblings has Intractable Epilepsy and seizes multiple times every day. Leah Hogsten | The Salt Lake Tribune Connor Campbell, 6, receives much love and understanding from his older sister, Katie, age 11, in managing his Intractable Epilepsy and the more than 100 seizures he has daily. Leah Hogsten | The Salt Lake Tribune Anavey Jensen, 7, has many generalized absence and tonic clonic seizures, although the cause is unknown. Anavey complains that her current medications "make her head feel strange," Friday, December 27, 2013. Leah Hogsten | The Salt Lake Tribune Glenn David Maughan, 11, more affectionately known as "Bug", was every bit a great big brother before he began suffering seizures from intractable epilepsy due to a cerebral folate deficiency. "To run outside, to climb and ride bikes like he used to- having him enjoy those things again- would be a miracle that would bring all our family back," said his mother Annette Maughan. Leah Hogsten | The Salt Lake Tribune Holden Cromar, 6, has complex partial seizures and focal onset seizures that last up to 50 minutes stemming from intractable epilepsy. In an effort to get the care he needs, including the drug Alepsia, he and his family moved to Colorado Springs, CO in December 2013. Leah Hogsten | The Salt Lake Tribune Cutler Henrie, 7, is the oldest of three siblings. Cutler suffers one to three seizures a day, lasting up to 15 minutes each from cortical dysplasia.

By Kirsten Stewart The Salt Lake Tribune

· March 7, 2014 11:37 am

This is an archived article that was published on sltrib.com in 2014, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.

Utah's Legislature has less than a week to decide whether to pass HB105, which would give families trial access to a nonintoxicating cannabis oil shown to quell seizures in some children who have exhausted all other remedies. Read the full story here, and hover over the photos to learn about some of the children who wait.

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