Please visit Alyssa's Blog to read about what is going on with her from week to week. It's updated as often as is possible, with our hectic lives.
Our latest fundraising goal is to get Alyssa a custom-made trike! She has never been able to go a trike due to her poor muscle strength (both in her legs, and in her core), and her overly flexible joints. And she is now getting too tall to even try most of the "baby" trikes that are available. So some investigation was done into getting her a custom-made one, and she was able to go it! Very easily! And it comes in PINK! Unfortunately, it costs £1700, so we are now raising money through various events to get her a special PINK SPARKLE TRIKE!
Please visit the blog to learn more about our fundraising events :)
I hope to share with you what my daughter's life has been like so far ... so you can all truly understand and appreciate the gift of pain, which we take very much for granted!
Alyssa has Congenital Pain Insensitivity (CIP) and does not feel pain anywhere other than internally. This has led to many unintentional injuries and mutilation. Through sharing Alyssa's story, it has helped us find other sufferers of CIP, from around the world. This condition is so rare that, without the internet, we would not know anyone else who suffers from it.
I am now part of a FB group, which offers support to those experiencing Pain Insensitivity - regardless of cause - and I am happy to be contacted directly via firstname.lastname@example.org if anyone would like more information.
Alyssa's pain insensitivity is believed to be due to a very rare genetic mutation, giving her a suspected diagnosis of a rare "set" of disorders. These disorders are known collectively as the HSAN (Hereditary Sensory Autonomic Neuropathies) and are some of the rarest disorders in the world. There are 7 recognised different types of HSAN, and - as well as the Pain Insensitivity - these have many other symptoms affecting sufferers.
Alyssa's suspected type of HSAN is believed to be Congenital Autonomic Dysfunction with Universal Pain Loss (CAD for short), and both myself and Alyssa had blood taken, when we visited Dr Axelrod in New York. In the hope that she can compare it with other CAD patients' and that a gene mutation can finally be identified. If this is successful, then it means that future sufferers will be diagnosed far more easily, by a simple blood test!
If you would like any further information, please feel free to contact me at:
We reached our Sensory Room goal, and I'm delighted to say that it has proved very useful to us, since completion. Alyss broke her foot in April last year (and it took 10 weeks to be officially diagnosed, because she still walked about on it!), then broke her leg in the summer. And had to be non-weight-bearing for a number of weeks, and then "light" weight-bearing for quite a few more, and trying to convince someone who doesn't feel pain to REST is a feat all by itself. She didn't understand that she couldn't just stomp about on her broken leg or foot, so the padded room was the ideal place for her to play ... though even then we had to step in, because she was too rough on them!