Sunday, 27 January 2019 00:00

Tia's Treasures Update

Written by  Lisa Hutchinson
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Tia's Treasures Update

So far Tia has raised over £500 for Young Epilepsy, £200 for The East of England and funded 2 Pulse Oximeters, 3 Brio Wrist Alarms, 1 Alert It Mattress Alarm, 1 Emfit Mattress Alarm, 1 Empatica Embrace Wrist Alarm and 2 Cameras to monitor those with Nocturnal Seizures.

Toby's original diagnosis back in May 2018 was Focal Seizures and Focal Motor Seizures which generalise into Tonic Clonics, since then he has been on daily medication but still has various types of seizures, Myclonus, treated for Asthma and now undergoing investigations for food allergies or intollerances but he remains a happy mischievous toddler.

As November was National Epilepsy Awareness Month Tia created a flyer with information regarding Epilepsy highlighting the seriousness of it and that there is no cure to be given out and displayed you may have spotted it in local shops.

Tia has also been decorating and hiding Epilepsy Awareness themed Norfolk Rocks as well as Shells which she has used to raise awareness for SUDEP (Sudden Unexplained Death in Epilepsy) naming them Shells for SUDEP, her 5 brothers have also helped to get involved with the decorating and hiding including Tommy (2) and Toby (1).

On 13th November Random Acts of Kindness were hidden and given out for World Kindness Day not only to raise awareness of Epilepsy but in memory of their Great Grandad Donald Brown who passed away in February this year, as 13th November would have been his 95th Birthday.

As Toby's Epilepsy seems to be changing resulting in Seizures during the night Tia has taken it upon herself to research other ways to help Toby as well as help us to get some sleep as around 3 hours per night for 2 very busy parents isn't good, Tia has been in touch with a lady called Kate Farmer from a company called PulseGuard based in Kent, which is a non profit family business with personal experience of living with Epilepsy.

PulseGuard is an alarm simular to Toby's current alarm but more reliable and lots more features which will be of use to help monitor Toby's Epilepsy, Tia plans to fundraise enough for this for Toby which will enable us to donate his existing alarm to help someone else.

You can support Tia's Appeals by visiting www.justgiving.com/crowdfunding/HelpTiatoHelpOthers and www.justgiving.com/crowdfunding/HelpTiatoHelpTobyAgain

Links to our social media can be found by visiting www.TiasTreasures.net

Tia plans to continue working hard to support our chosen charity Young Epilepsy and fund Seizure Alarms into 2019 Tia's Treasures 8th year, we all get involved as a family and appreciate the continuous support received.

tiatreasureteam.jpg

The Tia's Treasures Team Alex, Tia, Adam, Jamie, Tommy and Toby Summer 2018

Read 783 times Last modified on Sunday, 27 January 2019 20:52

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