Chris
Carmel, Indiana
Christopher Phillip Holleman was born on December 22, 1997 after a somewhat rocky pregnancy. His mom had placenta previa. His labor was rapid after being induced. His apgar scores were 9 and 10. We first started noticing something was not right when he was about 5 months old. It was really hot outside and we were at Lowe’s. He got limp as a dish rag and was “out of it. “ This happened a few times. He also had paralysis episodes. At 9 months, he was not able to sit and was not hitting his milestones. His eyes were crossing and we knew that something was wrong. He was diagnosed with Cerebral Palsy and the journey began. He was in First Steps and did therapy 5 to 6 times per week. He really started to make progress. At 18 months he was walking but shortly after that, we noticed these odd little head “drops.” He would have them in the mornings mainly but it became so frequent that he was having at least 100 a day of these little drops. This was the beginning of a long journey to a diagnosis.
After trying every possible seizure med which made him worsen, we begged to put him on the ketogenic diet. We were told that it was only for severely mentally handicapped children and that he would need a G tube. We weren’t willing to accept that so we took him to Johns Hopkins where he started the keto diet by mouth at age 3. He was so toxic on medications that he got severely dehydrated and lost so much weight that we had to take him off the diet. We knew that it was working for his seizures but he was very sick. After 6 months and a weight gain, the seizures got worse again so we took him to Chicago and had him placed on the ketogenic diet. It worked-IMMEDIATELY. He was talking, running and so happy. It was our miracle. This went on for 2 years and we tried to take him off. The seizures came back. So we tried again for another 2 years and again, took him off the diet and the seizures returned. It was a vicious cycle and we had a lot of physicians, family and friends doubting us and thinking that we were crazy for keeping him on the diet for so long. But in our guts, we knew it was the only thing that worked, we just didn’t know why.
After trying every possible seizure med which made him worsen, we begged to put him on the ketogenic diet. We were told that it was only for severely mentally handicapped children and that he would need a G tube. We weren’t willing to accept that so we took him to Johns Hopkins where he started the keto diet by mouth at age 3. He was so toxic on medications that he got severely dehydrated and lost so much weight that we had to take him off the diet. We knew that it was working for his seizures but he was very sick. After 6 months and a weight gain, the seizures got worse again so we took him to Chicago and had him placed on the ketogenic diet. It worked-IMMEDIATELY. He was talking, running and so happy. It was our miracle. This went on for 2 years and we tried to take him off. The seizures came back. So we tried again for another 2 years and again, took him off the diet and the seizures returned. It was a vicious cycle and we had a lot of physicians, family and friends doubting us and thinking that we were crazy for keeping him on the diet for so long. But in our guts, we knew it was the only thing that worked, we just didn’t know why.
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After being extremely depressed and frustrated, we called Jim Abrahm’s with the Charlie Foundation (at 6 am-oops) and he suggested that we contacted Beth Zupec Kania in Wisconsin. He gave us her contact information and we contacted her. A few days later at about 9 pm, she called back and we told her our story. She asked if Chris had ever had a spinal tap and we said, no. She suggested that before we take him off the diet and consider brain surgery, we might consider having him tested for the Glut 1. This was the first time we had heard it. We called our neurologist and they did not take us seriously. So we had our pediatrician call another neurologist and he ordered the tap. A week later and at age 9, Chris was diagnosed with Glut 1. If it weren’t for Beth, I don’t think we would have been diagnosed. But who knows, right? We came to meet Dr. DeVivo and his team a few months later and fine tuned Chris’ diet.
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Chris is now 12 years old. He is known for his million dollar smile. He loves Purdue and collects baseball hats. He can ride a bike for miles at a time. He is a boy scout. He loves to Play Wii, trade silly bands, look at cars and has a love for life. He has 3 brothers who keep him in check. He has 6 grandparents, 16 cousins and 4 aunts, 5 uncles who all love him very much. If his dream were to come true, he would be able to eat like everyone else. Chris has taught many in his short life that we can’t take life for granted. We are so blessed and should live each day to the fullest. We are so fortunate to have him in our family.
update 2011
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Chris completed 6th grade this year and will go to middle school next year. He continues to surprise us all with his reading and math skill development. His biggest milestone this past year was his social development. Chris has a best friend now! His name is Chris, too! He has 2 good friends from school and they have had play dates and overnights. This has really helped Chris blossom. Another exciting thing for Chris this year was getting a puppy. We got "Henry" for the boys on Easter weekend. It is truly beyond amazing to see the love that our sweet lab puppy can share with Chris. Chris feeds Henry and is the first to take him out every morning. Henry is so patient and loving. We could not have asked for a better "companion" for him.
Chris continues to be on the ketogenic diet. His seizure control has not been as great this year but mostly due to Chris becoming so very tired of the oil and cream. He has been on the diet for 10 years now. We are very proud of him for being such a trooper! |
update 2018
Chris is now 20 years old. He graduated from high school with a certificate of completion in 2017. He is a busy man that works at Chic-Fil-A, Good Will and volunteers at various community activities. He attends a social day program group twice a week to hang with his peers. He is involved in Special Olympics where has participated in swimming, basketball and getting ready to start cycling. He is involved in Best Buddies and also at his church. He loves taking the city bus where he needs to go and enjoys Ubering as well.
Getting to 20 wasn’t easy for Chris and puberty was difficult to say the least. He developed a movement disorder which is common with Glut1 and got ketoacidosis which slowed him down for over two years. Chris has an awesome team (dietician, MSW, doctor and case manager) that developed a plan for him to learn to remain on the ketogenic diet as an adult using an exchange system with menu cards and it has worked very well for him. He also has used an app on his phone to track his energy and keeps fat bombs with him as needed to maintain energy. With a combination of the diet, supplements and medication, he is doing much better now and is thriving.
Chris recently went to the “Night to Shine” and had a blast. His family is continuing to work with Chris to develop a “Good Life” as an adult life for Chris with many different connections, challenges and opportunities. Glut1 is not going to slow Chris down. We are very thankful to the Glut1 Deficiency Foundation for its continued work in advocating and creating awareness in the Glut1 community.
Getting to 20 wasn’t easy for Chris and puberty was difficult to say the least. He developed a movement disorder which is common with Glut1 and got ketoacidosis which slowed him down for over two years. Chris has an awesome team (dietician, MSW, doctor and case manager) that developed a plan for him to learn to remain on the ketogenic diet as an adult using an exchange system with menu cards and it has worked very well for him. He also has used an app on his phone to track his energy and keeps fat bombs with him as needed to maintain energy. With a combination of the diet, supplements and medication, he is doing much better now and is thriving.
Chris recently went to the “Night to Shine” and had a blast. His family is continuing to work with Chris to develop a “Good Life” as an adult life for Chris with many different connections, challenges and opportunities. Glut1 is not going to slow Chris down. We are very thankful to the Glut1 Deficiency Foundation for its continued work in advocating and creating awareness in the Glut1 community.
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