Jake's Web Page 
| Links to pages of interest AHCF Give Kids the World Great Pics of Me and My Family Make A Wish Sunrise School |
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| Jake having some fun on his birthday |
Jake on a good day riding his bike! |
Jake excited because his nephew Tyler is visiting. Jake has dystonia of his right arm. |
Jake and Tom having some fun on the quad
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Jake suffers from a very rare neurological disorder called Alternating Hemiplegia of Childhood. He first developed the symptoms at age 14 months, but was developmentally delayed since birth. He was misdiagnosed as having seizures until he was 5 years old. He saw Dr. H. Chugani in Detroit and was finally diagnosed with AHC. There is no known cause or cure for AHC. Treatment consists of treating the hemiplegia with a drug called Flunarizine. Unfortunately, this drug is not available in the United States, although it is approved as an orphan drug for the treatment of AHC. That means that we can use it for Jake, but getting it is another matter. The drug has worked wonders for Jake. He used to have "episodes" or "attacks" that could last for 10 days in a row. These attacks consisted of paralysis on one or both sides of his body, inability to speak, eat, or swallow, and painful attacks of dystonia or stiffening of his extremities. Since the use of this drug, he rarely gets the paralytic spells but continues to have dystonia. There are about 100 children known to have this disorder in the United States. This disorder is commonly misdiagnosed as seizures. There is currently a study being done to determine if AHC is related to migraines. To learn more about AHC, please visit the AHCF website.
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| Jake and Luke on their
12th birthday. Jake has dystonia of his right arm and his face is lopsided. |
A great picture of Jake!!! |
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| Jake was granted a wish
by Make A Wish. We had a great time while staying at the Village at Give Kids the World. |
We had a great time at
Idlewild this summer. One of Jake's favorite places to go. |
Click on the dirt bike above if you would like to send Jake an email!!!
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