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Ok, as my followers can see, I am changing just about everything about this page. There is a reason. Andrew's diagnosis has changed.
At 14 months old Andrew was diagnosed with a seizure disorder, however, they did not know the cause. A month later his neurologist ordered an epileptic genetic panel that tested for 186 epileptic markers. At 17 months, we received the devastating news. Andrew was diagnosed with CDKL5.
What is CDKL5? it is an incredibly rare seizure disorder that was only recently discovered in 2004. As of 2017 there were only between 1200 and 1500 cases world wide, and only approximately 100 of those are boys. It is so rare in boys because it is a genetic mutation on the X chromosome. A VERY brief explanation of CDKL5 is that it causes uncontrollable seizures that change throughout their, Cortical Visual Impairment, Low muscle tone, hyper flexibility. All of Which Andrew has. Most kids end up with gtubes, most kids are non verbal, most kids are wheel chair bound. Statistically,boys drop off of the developmental charts at sitting independently, meaning most never stand alone, or walk alone. There is very limited information on CDKL5 because it is so rare, and they have no known life expectancy times. Andrew is the only one with his variant on the 16th exom. Most kids are the only one of their kind because its so new.
So why am I asking the amount that I am for fund raising? Because I don't know a good number. I know we will need to get a bigger, newer vehicle that can hold his adaptive stroller, which we are in the process of getting, and, most likely, a wheel chair down the road. The expense of staying at the hospital is tremendous and traveling to his specialty appointments, two hours away, is adding up. None of this is going to go away, none of this will change. The hospital is, and will be, our home away from home. I am still training a seizure alert dog for Andrew as well.
Currently Andrew has vision therapy and Occupational therapy, but eventually speech therapy and physical therapy will join the list. Some of the things he needs are covered by insurance while others aren't.
Anything you can donate to help andrew is so very appreciated and we are so greatful. If you cant donate, please share. Please make sure that if you share this on fb, your privacy setting on the post is public so that all can see it.
At 14 months old Andrew was diagnosed with a seizure disorder, however, they did not know the cause. A month later his neurologist ordered an epileptic genetic panel that tested for 186 epileptic markers. At 17 months, we received the devastating news. Andrew was diagnosed with CDKL5.
What is CDKL5? it is an incredibly rare seizure disorder that was only recently discovered in 2004. As of 2017 there were only between 1200 and 1500 cases world wide, and only approximately 100 of those are boys. It is so rare in boys because it is a genetic mutation on the X chromosome. A VERY brief explanation of CDKL5 is that it causes uncontrollable seizures that change throughout their, Cortical Visual Impairment, Low muscle tone, hyper flexibility. All of Which Andrew has. Most kids end up with gtubes, most kids are non verbal, most kids are wheel chair bound. Statistically,boys drop off of the developmental charts at sitting independently, meaning most never stand alone, or walk alone. There is very limited information on CDKL5 because it is so rare, and they have no known life expectancy times. Andrew is the only one with his variant on the 16th exom. Most kids are the only one of their kind because its so new.
So why am I asking the amount that I am for fund raising? Because I don't know a good number. I know we will need to get a bigger, newer vehicle that can hold his adaptive stroller, which we are in the process of getting, and, most likely, a wheel chair down the road. The expense of staying at the hospital is tremendous and traveling to his specialty appointments, two hours away, is adding up. None of this is going to go away, none of this will change. The hospital is, and will be, our home away from home. I am still training a seizure alert dog for Andrew as well.
Currently Andrew has vision therapy and Occupational therapy, but eventually speech therapy and physical therapy will join the list. Some of the things he needs are covered by insurance while others aren't.
Anything you can donate to help andrew is so very appreciated and we are so greatful. If you cant donate, please share. Please make sure that if you share this on fb, your privacy setting on the post is public so that all can see it.