Our Kids Can Do Anything
Organized by: Bodo Hoenen
The end of our story and the beginning of many more
September 26, 2017
Just over two weeks ago my daughter was admitted to the hospital ICU. She got a rare strain of the cold that coincided with an asthma attack. It resulted in her left arm being paralyzed, a general weakening of her core muscles, and spinal nerve damage due to a viral infection and the pressure it caused. It's a very rare condition called 'Acute flaccid myelitis' (https://en.wikipedia.org/wiki/Acute_flaccid_myelitis)
Only 20% of children who have gotten this have had a full recovery. Most have had very little if any. Which is why we have been looking for alternative treatments to complement the physical therapy and rehabilitation therapy we are starting to do. My daughter and I decided that it would be really cool if we would build a robotic arm prosthetic to help her arm move. Lorelei is super excited with this and over the past few days we have started to look into this. We are also researching various other possible treatments, and we have received a lot of great advice so far and would welcome any other info that could help us. Lorelei is actively taking part in her own treatment, helping me research and building her own arm, she has been an inspiration to us all!
We are making these plans, research and all we are doing open-source, so that others who may be in similar situations can use this information, files and all the resources we collect. In addition, my day job involves helping the most underserved children around the world (http://www.dev4x.com) and we will also be using this as an opportunity to help any other children we meet who could benefit from a prosthetic arm like my daughter and I are building.
Unfortunately, this project, the various treatments and related expenses will be too much for us and we are asking for any help that can be provided. If you have 3D printing, prosthetics, nerve regeneration or any other relevant expertise or resources we could use, please reach out. Or, If you could spare any funds please consider donating to this.
What the money will be used for
We are not yet sure of all the expenses and costs, and should have a better idea in a few weeks. Once I have this information I'll be posting it here. I'm taking on additional evening work where possible, but even with that, we will definitely need some help.
Anything would be greatly appreciated!
We thank you!
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