Clara is a 4 year old girl living in Sicily, Italy.
She is affected by a severe form of epilepsy. Her crisis do not stop if not given valium and often we have to take her to the ER because of insufficient respiration. If medicine is not given, she eventually goes in to coma...
Her last crisis was a really big seziure, she had to be intubated and sedated, and remained in intensive care for 2 days. That was a close call, and that is why we would like to get some devices to help us watching over her, especially while sleeping, but also when she is not with one of us (for example at kindergarten).
We (her mom and dad) are putting up this fund rasing because we would feel a lot more relaxed if we had some monitoring gear for her while sleeping (a sensor to put under her matress) and a wristband for her to wear when not with one of us (for example at kindergarten).
Clara is a twin born 2 months early. We knew already that her corpus callosum (the part of the brain that connects the right and the left side of the brain and through which all comunication from the two halves passes) did not develope. Having this condition it takes a lot of time for her to learn new things, and she has some problems walking. The corpus callosum agenesis is also the cause of her epilepsy, together with minor brain damage due to suffering during emergency c-section.
The things we would like to purchase for the money if we manage to raise some are the following:
MP5 Ultra in bed sensor A mat connected to high tech devices to place under Claras matress in bed. It will let us know if there are any unusual movements indicating there is a nocturnal seizure ongoing. Around 650 euros (shipping and personalization included.
The Embrace watch , a wrist band that monitors movements, stresslevels and a lot more. (we are aware that there is a long waiting time for this, since the production is crowd funded). Around 200 euros
A Samsung Galaxy S4 or similar to work together with the watch and send warning signals to mine or my husbands phone when a seizure starts. Price around 160 euros
If we reach the goal and more, every euro not used on the above mentioned devices will be saved for our next trip to the childrens hospital Meyer in florence where both Matilde and Clara are checked on by specialists every 8-9 months. (Also Matilde has brain damage but does not suffer from epilepsy).
Thank you for taking time to read about Clara. We would be very, very happy if this dream of ours could come true.
Love from Clara, her twin sister Matilde, and us, her parents! <3
If you prefer to use swish the number is +393889373401