A devastating diagnosis for a young child is every parent’s worst nightmare. All too often there’s nothing that can be done, but occasionally there’s a window of opportunity to make things better for the child, even if we can’t offer a cure. In that case even a simple hack, like a rapid response stairwell light to help deal with night-blindness, can make a real difference.
[Becca] isn’t yet a year old, but she and her parents carry a heavy burden. She was born with Usher Syndrome, an extremely rare genetic disease that affects hearing and vision to different degrees. In [Becca]’s case, she was born profoundly deaf and will likely lose her sight by the time she’s 10 or so. Her dad [Jake] realized that the soon-to-be-toddler was at risk due to a dark stairwell and the night-blindness that accompanies Usher, so he came up with a simple tech solution to the problem.
He chose Philips Hue LED light strips to run up the stringer of the stairs controlled by a Raspberry Pi. Originally he planned to use IFTTT for the job but the latency resulted in the light not switching on fast enough. He ended up using a simple PIR motion sensor which the Pi monitors and then uses the Hue API to control the light. This will no doubt give him a platform for future capabilities to help [Becca].
We’ve covered a few builds where parents have hacked solutions for their kids, like this custom media center for the builder’s autistic son. We suspect [Jake] has a few more tricks up his sleeve to help [Becca], and we’re looking forward to seeing how she does.
Makes me think that genetic counseling will be an inevitable part of our future.
as a parent as well as someone who personally suffers from a degree of night blindness as well as serious light and sound sensitivity I know how difficult it can be. I think you have come up with a wonderful idea to help your child ! we all want what’s best for our children and there is no such thing as”over kill”when we are trying to help them. Kudos Dad !!! may god bless you and your family !!! Lil D ????
Cool, but a bit overkill? Wouldn’t a simple motiondetector, rigged to a relais do? No need for a RPI, or even a microcontroller?
I guess having a micro or whatever could change the colour of the lights depending on how far into the night it is, with a soft fade on and off. Also I’m guessing the hue lights would prefer to be PC controlled. For sure could be done cheaper, but when it comes to your kids you deal with the cards you’ve been given. Well done dad. I can’t even imagine the mental anguish you’re going through. Props for your ingenuity and coming up with a solution to your problem.
Thanks JK, There are many ways to approach this. I chose the Pi because it now becomes the hub for a number of other home automation projects. So now if she is in her room and we need her attention we can easily notify her via flashing lights. Different color lights could mean different things etc.. Rather than a bunch of discrete solutions the Pi provides a platform that is easier to build on and maintain.
At first I also thought, why a pi? But I now realize that this is only the beginning of a much bigger project.
I wish you all the best. So take care and don’t forget to have fun while doing so.
PS: the height of lightswitches are a problem for youngsters (they have problems turning the lights ON), but when they get older they tend to have more and more problems in switching the lights OFF. All evening I’m running through the house switching the lights of everywhere and nobody knows who has turned them ON.
You COULD turn on a Philips Hue light by cutting the power and re-establishing it a second or so later, but that’s really inelegant, and when you’re spending $70 on a lightbulb, tossing an RPi into the mix to interface with the Hue API isn’t unheard of (It’s exactly what I did in my home to my Hue lights)
Learning to navigate without light is proven to work just fine. Though, how are people going to learn that if there are lights everywhere? So in the end I wouldn’t say that this project helps, or is more then a waste of resources.
why can’t the kid just put the normal light on?
she is going to have to learn to navigate them in the dark if she will be blind soon anyway.
Toddlers are going to have to get a job soon too. That doesn’t mean you shouldn’t buy food for them.
Only at around 4 are kids tall enough to turn the normal lights on.
Tell that to my 15month old… he pulls a chair over to climb up to reach the switches.
Not many people would want a toddler to practice learning to deal with bad situations by practicing on staircases in total darkness. This child is already profoundly deaf. No. Not a waste of resources.
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A father doing what he can for his child when he’s told all is lost and it’s just a matter of time. Kudos to him for doing.
>[she] will likely lose her sight by the time she’s 10 or so.
This is so horrible. :-( :-( :-(
This is a loving and tender hearted parent , who while he can make his daughters life a little easier is doing what he can. Life will go on and then they will need to learn some new things that will help. But for now…. Thumbs up dad!!
My husband also has Usher’s Syndrome. His hearing loss is about 80%, and he has both night blindness and loss of peripheral vision. He was told he woukd likely be blind by his thirties but is luckily still holding on to what he has pretty well at the age of 36. We have been married fourteen years and have two kids. He works full time at a job that he loves although he has lost the ability to drive. Hope and prayers to this family that this little girl may defy the odds and and have vision lasting longer than expected by her doctors as well.
The gal in the photo can’t be ???????????? worried about safety since she’s not using the handrail on those extremely steep stairs.
Also, why is there a window parallel to the handrail? The whole scene looks like something out of Alice in Wonderland.
The window is a diamond shape (and it’s indicating those stairs are rather STEEP.) If you were down at the level of the window and looking at it, it wouldn’t look odd at all.
I have a similar setup on my stairs as a night light for the kids. My wife didn’t like the idea of seeing the strip next to the stairs so I took a router and put a groove in the underside of the stair rail to embed the LED strip into it. It lights up the whole stairs and from the top you can’t see the light strip at all.
Wouldn’t it be better for the lights to be on the handrail, aimed downwards, rather than on the stringer where they have an upwards visible component? Seems having them down low would cause glare, particularly if the child passes through a phase where glasses are required, and on the rail might better illuminate the stairs and cast fewer shadows because of more reflection off the walls.
Oops… I see Nate made a similar observation above.
You should try an LED strip light and use arduino. I think it would be extremely easy to program and work flawlessly. Use a good strip light. I don’t know if the CRI would help (makes colors look more true to life) lots of LED’s lack in certain colors like blues, reds etc. I own an LED company and have such a product, I’m not advertising or even selling but if you were interested I would donate some for you to try :) I hope things work out for you and your family.