Please prayerfully consider helping us in raising these funds to get Aaliyah's dog. A seizure dog will allow Aaliyah to have more freedom. It will be able to accompany her everywhere and alert others if she is having a seizure; hopefully, even the ones that we can't detect.
Shirts will be delivered approximately 2 weeks after the close date.
Aaliyah's Story
Aaliyah is a beautiful joyful 9 year old girl who has been battling epilepsy since immediately after her 3 month vaccinations. Her seizures never followed the "normal" rules, there was no specific symptom to look for. She has had almost all of them at varying degrees at different times in various combinations. The most severe seizures have previously led to respiratory arrest and status epileptus. She has had a number of seizures lasting over an hour, with a few of the longest episodes lasting over 3 hours.
During her first two years, she was in and out of the hospitals, often requiring "life-line" helicopter transport due to the severity of her condition. Her last "major" episode of her early years, when she was about 18 months old, required her to be placed in a drug induced coma for days to stop the seizure activity and allow her brain to rest. That episode and its month long hospitalization left her with Todd's paralysis on her left side. She had to learn to crawl, stand, walk, hold items, and even eat, all over again. This process took years.
When she was two years old, during another two week hospitalization, she was put on a cocktail of 4 concurrent anti-seizure medications that, for the most part, controlled her seizures. Most of her seizures were then milder, and shorter in duration. Some days she had none, others we weren't sure we would be able to keep her from the hospital. She still needed constant monitoring, tweaking of her medications, and occasional "Diastat" doses to head off a seizure from putting her into status. But we were able to successfully manage her from home for 5 years.
When coupled with a special Modified Atkins diet she started in January, 2011, her seizures were under good control for the first half of the year. She had even begun using a half-dozen or so words to communicate. Then she had a single seizure episode on July 30, after which she had a restless night and was unresponsive all day on July 31, causing us to take her to the ER. She was then hospitalized on July 31, 2011 thru September 16, 2011. During this time she again had hour and multi-hour seizure activity until requiring another drug induced coma. This time she lost the use of her right side and we had to begin the learning process all over. We also moved her to the ketogenic diet, and removed two of the four concurrent anti-seizure medications. The diet, which mimics fasting, is the primary method of controlling her seizures.
She now has a g-tube, a wheel-chair, and other support equipment on her road to recovery. It is not as easy to handle a 75+ lb. 9 year old as it was a 20 lb. 18 month old. Helping her re-learn life skills has been a slower more difficult process than before.
Our Challenges
The level of observation Aaliyah requires can be taxing on a number of activities, both with her and with the rest of the family. Even when Aaliyah is sleeping peacefully, she must be monitored, due to the risk of an undetected seizure, or cluster of seizures. Currently she must be watched constantly. Her seizures can be silent and undetectable by normal monitoring equipment other than an EEG. Even with an EEG connected continuously, a professional would have to be monitoring it 24x7 to be able to detect a seizure for intervention. In a recent hospitalization (2011), she had an episode where she was in status for over 45 minutes before any of her vitals changed from normal. The longer the seizure, the greater the risk of brain damage, and the harder it can be to stop. When in the hospital, her mother and I must both be there watching her in shifts around the clock, since there is no good method to detect her seizures.
A seizure dog will allow Aaliyah to have more freedom. It will be able to accompany her everywhere and alert others if she is having a seizure; hopefully, even the ones that we can't detect. It should also sense the seizure more quickly and consistently than we are able to. This will give us peace of mind when we are not able to be with her, like during school, and give us the ability to relax when we are together, and maybe even sleep a little. We are planning on getting a large dog, that will also be able to assist her with mobility as she continues to re-learn to walk.
We have been investigating seizure dogs for a number of years. There are several programs out there; however, most of them don't provide dogs for children. Some even provide the dogs free of charge; but, these have waiting lists of many years. It costs approximately $22,000 to train Aaliyah's seizure dog. With 4 Paws for Ability, they ask the families to raise $13,000 of that expense so they can maximize the number of needs they can meet with these wonderful animals. With this system, the waiting list is only as long as it takes to raise her portion.
Please prayerfully consider help us in raising these funds to get Aaliyah's dog. Donations can be made directly from this page.
Thank you, and God Bless.
Patrick, Georgean, Aaliyah & Family
Supporters