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By Mick

I am hosting a fundraiser to Make March Purple for epilepsy

Every 33 minutes a life is turned upside down by epilepsy.

I am raising funds for Epilepsy Queensland to ensure the epilepsy helpline can continue to answer every call for help. Did you know that up to 90% of Australians with epilepsy do not feel they have access to the support they need to live well with the condition? By supporting my fundraiser you will make a real difference.

Thank you!

Please help me to Make March Purple for epilepsy

Raised

$278

My Goal

$700

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My Achievements

My Updates

2024

Friday 2nd Feb
Been a busy 2024 already,
Townsville based, already had a cyclone carrying its own challenges.

Harry and our families has had a great start to 2024 otherwise. Looking forward to seeing how much more ww can climb this year.

Bring on 2024 

Strand purple day

Saturday 25th Mar
Heading to the strand for the 26th with the family. Will have a stall set up with some drinks.

😊😊

Dravet Syndrome

Friday 10th Feb
I want to help create awareness for epilepsy as in our home our warrior carries his condition known as Dravet Syndrome.

Dravet syndrome, previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare form of intractable epilepsy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime. Dravet syndrome has an estimated incidence rate of 1:15,700 individuals, over 80% of whom have a mutation in their SCN1A gene [1].

Dravet syndrome is a Developmental and Epileptic Encephalopathy, or DEE, part of a group of severe epilepsies with frequent and difficult to treat seizures and significant developmental delays. Seizures in Dravet syndrome usually begin during the first 2-15 months of life, often in the presence of fever or warm temperatures. Seizures are frequently prolonged, and are not well managed with current medications. Patients present with a variety of seizure types that generally evolve with age. As with all DEEs, Dravet syndrome includes more than just difficult to control seizures. Other comorbidities such as developmental delay and abnormal EEGs often emerge during the second or third year of life. Common issues associated with Dravet syndrome include:

Prolonged seizures
Frequent seizures
Behavioral and developmental delays
Movement and balance issues
Orthopedic conditions
Delayed language and speech issues
Growth and nutrition issues
Sleeping difficulties
Chronic infections
Sensory integration disorders
Dysautonomia, or disruptions of the autonomic nervous system which can lead to difficulty regulating body temperature, heart rate, blood pressure, and other issues
Current treatment options are limited, and the constant care required for someone suffering from Dravet syndrome can severely impact the patient’s and the family’s quality of life. Patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections [2,3]. Research for improved treatments, particularly disease-modifying treatments, offers patients and families hope for a better quality of life for their loved ones.

Thank you to my Sponsors

$45

Townsville Members

$80

Members Of The 4 Health Battalion

$63.30

Liam Frye

$26.38

Terri Anne

For my nephew who continues to thrive and be a joyous loving boy Harry despite all of the challenges he faces due to his medical condition - dravet syndrome.

$10.55

Jia Zhang

$26.38

Phuong Pattison

$26.38

Michael Pattison