Allison
Colorado Springs, Colorado
Born Oct. 13, 1994
Diagnosed, June 1995
Debra Mailman Clinic
Jackson University, Miami, FL
Dr. Paul Benke
Born Oct. 13, 1994
Diagnosed, June 1995
Debra Mailman Clinic
Jackson University, Miami, FL
Dr. Paul Benke
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Allison's journey began at one month old. Just little things missing that had Mom concerned. "There's something different about this baby." With Allie being our fourth child, you just know. At three months we saw her first seizure. We didn't recognize it at the time, and the doctor found nothing wrong. Nine weeks later, she had her first grand mal. We videotaped it and the search for a diagnosis began.
She was eight months old when we first heard the words, "Glucose Transport Defect." We started our part in research with Dr. De Vivo and would travel to NYC whenever asked. We've maintained her health through the ketogenic diet. Though not a perfect solution, she prospered and made great strides. Walking was finally conquered at four years old. She has speech therapy at school as well as some outside therapy.
All her milestones are delayed, and at 15, she is just beginning to comprehend her disorder and has gotten over her embarrassment of it and now does her best to answer questions herself. She curses the diet but realizes the consequences when not followed. Her seizures last approximately 45 minutes and the postictal phase last five hours. That’s the toughest part of all for us as it’s hard to watch her suffer through it with little we can do but to make her as comfortable as possible.
Allie is always praying for a cure so she can eat French fries and pizza like the other kids and wants to drive, fly, be a doctor and a mommy! She wants to travel, work, and have a husband, a family and we want these things for her. She's a great kid, mellow, caring, funny and on the honor roll....Go Allie!
She was eight months old when we first heard the words, "Glucose Transport Defect." We started our part in research with Dr. De Vivo and would travel to NYC whenever asked. We've maintained her health through the ketogenic diet. Though not a perfect solution, she prospered and made great strides. Walking was finally conquered at four years old. She has speech therapy at school as well as some outside therapy.
All her milestones are delayed, and at 15, she is just beginning to comprehend her disorder and has gotten over her embarrassment of it and now does her best to answer questions herself. She curses the diet but realizes the consequences when not followed. Her seizures last approximately 45 minutes and the postictal phase last five hours. That’s the toughest part of all for us as it’s hard to watch her suffer through it with little we can do but to make her as comfortable as possible.
Allie is always praying for a cure so she can eat French fries and pizza like the other kids and wants to drive, fly, be a doctor and a mommy! She wants to travel, work, and have a husband, a family and we want these things for her. She's a great kid, mellow, caring, funny and on the honor roll....Go Allie!
2018 update
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Allison is 23 now and with this aging has come a few changes. She has graduated from high school and attends a day program now where she is among many peers that she went through school with. She is picked up and dropped off at our front door daily. They take her out in the community where she has many different experiences from simple shopping to working at local businesses for an hour or so at a time. Recently she worked at a coffee shop doing custodial work and also at a Good Will type charity where she puts clothes on hangers and price tags. They teach math skills, kitchen skills, and do field trips. On Fridays they have a talent show and lately, Allie has been the dj, when not doing a Michael Jackson performance of her own. I’ve been told she pumps up the crowd and turns everything into a party!
In her down time, she participates in special Olympics bowling, and basketball, and belongs to DuMyon Martial Arts, where she is a blue belt in Tae Kwon Do. This is a non-profit organization that caters to those with IDD, etc. We originally joined TKD for self defense as clients in the day program can lash out for many reasons and she seemed to be in the wrong place at the wrong time, so she needed to learn how to deal with the unpredictability of others. She has been practicing for the 2020 Paralympics in Japan for over year. Last month we learned that TKD was being dropped from the Paralympics due to lack of interest around the world, and she proceeded to seize for 3 of the next 5 days as a side effect from this dream being dashed. Since joining TKD, she’s been released from Physical Therapy. She topped out at speech therapy, with them feeling they’ve done all they could. Her speech is hard to understand and she needs to be prompted to slow down and annunciate, which she will gladly do.
Her seizure activity includes 20-30 absence seizures a day. They do not disrupt her. We used to deal with seizures brought on by sneaking food, but locked cabinets and cameras helped her break that behavior. Most seizures now can be contributed to over excitement or huge disappointments. I still withhold carbohydrates whenever something big is happening in her life to avoid seizing.
On 8/3/12 Allison had a grand mal while swimming and I couldn’t get her out of the pool. During the rescue her head was dropped hard on the cement and we lost her. She was gone for three minutes and was Flight for Life’d by helicopter from Colorado Springs to Denver Children’s Hospital where she was put into a medical coma for three days. She was back in that same pool three weeks later having no memory of the ordeal and was completely recovered in six weeks. On the 5th anniversary, she got a tattoo on her wrist to commemorate the experience and to remind herself that life is precious.
Other interests include dancing, swimming, hiking, traveling, haunted houses and horror flicks! She is thinking of going to college for acting and sign language. She has had some modeling opportunities, which she loves. Allison is very adventurous and game for anything. She is in a long term relationship and hopes to marry some day. He is autistic and together, they need to work on independence but there is no way of knowing whether together, they can manage on their own. They would love to drive and have their own place someday, but she is aware that she has to be seizure free to get a license, and has so much to learn to take care of herself and a home. We always speak of the future in an opportunistic, positive way.
We have had to find new doctors as she is now 23, and its been easier as the years pass to do so. After puberty her diet was changed from the Ketogenic to Modified Atkins as petit mals were coming too frequently. As a child, her seizures were mostly grand mals lasting 45 minutes, but now are usually petit mal that last for a minute or two and come in small clusters. She no longer loses consciousness, or is incontinent during these episodes, and vomiting is rare now. She feels better faster with two Tylenol, O2, and a good nap. Her new neurologist has heard a heart murmur and she has an appointment in April to have that checked out.
Allison is loved by everyone. She has an easy going personality, a great sense of humor, and I’m incredibly proud of her and her strength and resilience! She is eager to please and too trusting of humanity, making her vulnerable in public and on-line. But she’s never alone as she’s medically fragile. Her daytime para’s always hope to have her in their group as they say she’s “so easy!”
In her down time, she participates in special Olympics bowling, and basketball, and belongs to DuMyon Martial Arts, where she is a blue belt in Tae Kwon Do. This is a non-profit organization that caters to those with IDD, etc. We originally joined TKD for self defense as clients in the day program can lash out for many reasons and she seemed to be in the wrong place at the wrong time, so she needed to learn how to deal with the unpredictability of others. She has been practicing for the 2020 Paralympics in Japan for over year. Last month we learned that TKD was being dropped from the Paralympics due to lack of interest around the world, and she proceeded to seize for 3 of the next 5 days as a side effect from this dream being dashed. Since joining TKD, she’s been released from Physical Therapy. She topped out at speech therapy, with them feeling they’ve done all they could. Her speech is hard to understand and she needs to be prompted to slow down and annunciate, which she will gladly do.
Her seizure activity includes 20-30 absence seizures a day. They do not disrupt her. We used to deal with seizures brought on by sneaking food, but locked cabinets and cameras helped her break that behavior. Most seizures now can be contributed to over excitement or huge disappointments. I still withhold carbohydrates whenever something big is happening in her life to avoid seizing.
On 8/3/12 Allison had a grand mal while swimming and I couldn’t get her out of the pool. During the rescue her head was dropped hard on the cement and we lost her. She was gone for three minutes and was Flight for Life’d by helicopter from Colorado Springs to Denver Children’s Hospital where she was put into a medical coma for three days. She was back in that same pool three weeks later having no memory of the ordeal and was completely recovered in six weeks. On the 5th anniversary, she got a tattoo on her wrist to commemorate the experience and to remind herself that life is precious.
Other interests include dancing, swimming, hiking, traveling, haunted houses and horror flicks! She is thinking of going to college for acting and sign language. She has had some modeling opportunities, which she loves. Allison is very adventurous and game for anything. She is in a long term relationship and hopes to marry some day. He is autistic and together, they need to work on independence but there is no way of knowing whether together, they can manage on their own. They would love to drive and have their own place someday, but she is aware that she has to be seizure free to get a license, and has so much to learn to take care of herself and a home. We always speak of the future in an opportunistic, positive way.
We have had to find new doctors as she is now 23, and its been easier as the years pass to do so. After puberty her diet was changed from the Ketogenic to Modified Atkins as petit mals were coming too frequently. As a child, her seizures were mostly grand mals lasting 45 minutes, but now are usually petit mal that last for a minute or two and come in small clusters. She no longer loses consciousness, or is incontinent during these episodes, and vomiting is rare now. She feels better faster with two Tylenol, O2, and a good nap. Her new neurologist has heard a heart murmur and she has an appointment in April to have that checked out.
Allison is loved by everyone. She has an easy going personality, a great sense of humor, and I’m incredibly proud of her and her strength and resilience! She is eager to please and too trusting of humanity, making her vulnerable in public and on-line. But she’s never alone as she’s medically fragile. Her daytime para’s always hope to have her in their group as they say she’s “so easy!”
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