Denae
09-06-2007, 10:01 PM
Here is a copy of the letter that I just finished writing to send to the Epilepsy Foundation, they are going to use it to get groups to hold fundraisers in order to get Ri the Sleep Safe bed... We have to raise nearly $7,000.00 for the bed...
If I need to add anything, or if it sounds corny- or to wordy .. I need opinions...
__________________________________________________ ______________
To the outsider Heather Riley looks like any other 8 year old, freckles, curly red hair, and a toothy grin that will light up the room. Looking a little closer you will see that she has AFO's on both legs to assist in her stability when walking and running, you will see that she makes strange movements with her hands now and then, or you may just sense something else is different. Watching a little longer you will undoubtedly see dozens of seizures ranging from hardly noticeable blank looks, to convulsions that can only be stopped with an emergency medication.
Since the age of 2 we have been fighting a battle against epilepsy, Heather has tried more medications and combinations of medications than I can even remember. Two years ago she had a programmable device implanted called a Vagal Nerve Stimulator, at regular intervals it sends electrical impulses to the vagal nerve that are supposed to stop the seizures. While it has helped, it doesn't stop all of the seizures. We are considering the ketogenic diet in a desperate attempt at a more normal life for her.
One of the most serious problems I have with her right now is her sleeping situation, Heather can go for days at a time with only a few hours of sleep. As a single parent with three other children this makes things very difficult, I cannot watch her all night long to ensure she is safe. We have a mattress on the floor of her room to prevent falls from her bed due to the seizures, as she gets older and bigger this is not solving the problems that continue to mount. She is able to climb over the small bed rail that is on the mattress and is able to wander the house while the rest of us are sleeping, which for a child with the cognitive ability of a 3 to 4 year old this is very dangerous. I have gotten up in the morning to find her room upside down, the front door unlocked, drawers in the kitchen open, chairs pushed up to the kitchen counter where multiple dangers can be found. Then there are the numerous times that I have been woken from my sleep by a loud thumps, rushed to the steps to see that Heather has climbed the gate, fallen down several steps and is now in yet another of the relentless seizures.
A very frustrating aspect of having a child with a disability is knowing that there are therapies and equipment that will help your child and family but the costs are so high that they are near impossible to obtain. Group insurance will only cover a certain percentage of equipment IF they decide it is medically necessary, beds are not included. A bed that will protect her from her nightly wandering, and hitting the floor from seizures is well over $6,000.00 and not covered.
If I need to add anything, or if it sounds corny- or to wordy .. I need opinions...
__________________________________________________ ______________
To the outsider Heather Riley looks like any other 8 year old, freckles, curly red hair, and a toothy grin that will light up the room. Looking a little closer you will see that she has AFO's on both legs to assist in her stability when walking and running, you will see that she makes strange movements with her hands now and then, or you may just sense something else is different. Watching a little longer you will undoubtedly see dozens of seizures ranging from hardly noticeable blank looks, to convulsions that can only be stopped with an emergency medication.
Since the age of 2 we have been fighting a battle against epilepsy, Heather has tried more medications and combinations of medications than I can even remember. Two years ago she had a programmable device implanted called a Vagal Nerve Stimulator, at regular intervals it sends electrical impulses to the vagal nerve that are supposed to stop the seizures. While it has helped, it doesn't stop all of the seizures. We are considering the ketogenic diet in a desperate attempt at a more normal life for her.
One of the most serious problems I have with her right now is her sleeping situation, Heather can go for days at a time with only a few hours of sleep. As a single parent with three other children this makes things very difficult, I cannot watch her all night long to ensure she is safe. We have a mattress on the floor of her room to prevent falls from her bed due to the seizures, as she gets older and bigger this is not solving the problems that continue to mount. She is able to climb over the small bed rail that is on the mattress and is able to wander the house while the rest of us are sleeping, which for a child with the cognitive ability of a 3 to 4 year old this is very dangerous. I have gotten up in the morning to find her room upside down, the front door unlocked, drawers in the kitchen open, chairs pushed up to the kitchen counter where multiple dangers can be found. Then there are the numerous times that I have been woken from my sleep by a loud thumps, rushed to the steps to see that Heather has climbed the gate, fallen down several steps and is now in yet another of the relentless seizures.
A very frustrating aspect of having a child with a disability is knowing that there are therapies and equipment that will help your child and family but the costs are so high that they are near impossible to obtain. Group insurance will only cover a certain percentage of equipment IF they decide it is medically necessary, beds are not included. A bed that will protect her from her nightly wandering, and hitting the floor from seizures is well over $6,000.00 and not covered.