If your child has Lafora, please send us your child's photo and bio. We'd love to represent the many faces of Lafora and your contribution will help.
Lafora Parent Diaries:
Jake Buie: May 2012
Jake is now 20 years old. He graduated high school 2 years ago. Even our local television station came and did a piece on it. He did attend school the entire time. This was a major victory for all of us. Getting up in the mornings became increasingly difficult, but we did it! He was so excited when he was finally done with school, and excited that he could just stay home and sleep as late as he wanted to.
Since his video games became too hard for him about 2 years ago, he watches a lot of television; he enjoys watching all of his movies. My aunt stays with him while I work. This was an answer to our prayers!
The summer after he graduated we went on a Disney Cruise, made possible by Make-A-Wish. This was a great experience for him and his sister because they had never rode in an airplane, or been on a huge boat! The staff at the airline were very nice and helpful; even asked some people to move in the airplane so Jake wouldn’t have very far to walk from the door of the airplane to a seat. Then at the end of the flight we got to take a picture in the cockpit. The cruise was great. The staff treated us extra special and Jake had a wonderful time.
In April of 2011 Jake started hallucinating non-stop, for about 6 days. He wasn’t sleeping and he was not able to watch T.V. due to continual hallucinations. He then started having grand mal seizures one right after the other. We ended up at the hospital. About the second day in, the Dr. took us into “the room.” You know the room where he tells you the bad news. He believed, and I did as well, that this was the beginning of the end. We had arranged for hospice for when we got home everything would be ready. Lots of people were praying and well Jake gradually got better- praise the Lord- back to himself before the hallucinations, and after about a month of hospice we were able to discontinue it. The Lord was not done with Jake on Earth yet.
Jake is slowly progressing. He has to wear a bib all the time due to decrease control of his facial muscles. His speech has worsened as well. Simple words are difficult to get out. His walking is slow and unsteady; he has the want to but his feet and legs do not want to cooperate, and the myoclonics, well they do their thing at robbing him of everything that we take for granted; bathing ourselves, brushing our teeth, feeding ourselves, being able to keep our spit in our mouths, dressing, walking, talking, and the list goes on and on. We use the wheelchair most of the time except for walking around in the house. On his bad days the wheelchair is used all the time. On the other hand, he is still able to swallow his pills and his food. Most importantly he still has his sweet spirit. He smiles often and laughs a lot.