Epilepsy alarm devices for Clara

Fundraising campaign by Helena Eriksson

by Helena Eriksson

Giardini Naxos, it

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

Finally installed

Update posted by Helena Eriksson On Sep 01, 2016

Today we finally got the alert-it allarm installed. Because of various reasons it has been delayed. But today I finally got the time to bring it out and to call alert-its support to get guided through all the steps. Now we are ready to use it.

I have to say the service from alert-it is really, really good and I am glad we decided to buy the device from them. Before ordering we got guided on wich type of alarm to get for Clara. A lot of questions asked by them on Claras seizures to make sure we get the one that suits her best, and for installation I have been on the phone for 35 minutes with a very patient person from their support who explained everything.

Now we are going to use it for 10 days and write down the numbers and then call back to check if any parameters needs to be adjusted.

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Bed alarm ordered

Update posted by Helena Eriksson On Jul 18, 2016

We have ordered the bed alarm for Clara. We hope it arrives soon.

Thank you so much to all of you who helped by sharing or donating! <3

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Waiting

Update posted by Helena Eriksson On Jul 13, 2016

we are currently waiting for the money donated to transfer to our bank account. It will be available in a couple of days and then we can order the bed alarm for Clara.

In the meantime we changed our mind and are going to buy another brand than the one we first thought of. This is more expensive, but not only did we hear good things about it, it also has some more functions. Also, and maybe more important, comunicating with tje both companies the "new" one not only responded to my first mail within hours, but also they made a lot of question about Claras crisis to be able to recomend me the model best suited for her. The other company responded after 2 days.... a detail that seems pretty important to me....

This is the one we have chosen.

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Embrace wristband ordered

Update posted by Helena Eriksson On Jul 06, 2016

First of all, we would like to thank you all from the bottoms of our hearts! We could never dream of reaching the goal within just 24 hours, that is fantastic, and all thanks to all of you. Amazing!

Today w have ordered the embrace wristband for Clara. It will arrive in september.

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Childrens hospital

Update posted by Helena Eriksson On Jul 05, 2016

Thank you all so much for sharing and donating. We could never dream of this to go so fast! There are a lot of fantastic persons out there! <3

We just decided that if we reach the goal and more, the money not used for the alarm devices will be saved and used for our next trip to Florence, where both girls are controlled and checked by specialists in the childrens hospital Meyer. We go there fof check ups every 8-9 months and the next one should be in october or november.

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Wow!

Update posted by Helena Eriksson On Jul 05, 2016

We are overwhelmed! In less then 12 hours our story has been shared more then 200 times on facebook and 335 euros has been donated to Clara.

Thank you all so very much,you are all fantastic!

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Ulla Åkerström

Backed with €20.00 On Jul 13, 2016

maria mancini

Backed with €20.00 On Jul 11, 2016

Hej, jag har varit ute och rest och inte haft möjlighet att göra betalningar, men nu kommer ett litet bidrag även från oss. Så glad att ni redan kunnat beställa armbandet, men vet att pengarna gör nytta ändå! Kram till er alla!

Anonymous

Backed with €30.00 On Jul 09, 2016

Susan Adelbrant

Backed with €20.00 On Jul 07, 2016

Kämpa! Massa kramar från mig och Herny!

Anonymous

Backed with €35.00 On Jul 06, 2016

Anonymous

Backed with €10.00 On Jul 05, 2016