By Kyra Gillespie
The E-Tea fundraising campaign for Epilepsy Action Australia is on again this November and a young Pakenham family is urging the community to get involved after their son Hunter’s experience with epilepsy.
Members of the community are encouraged to host a morning or afternoon tea to raise funds for Epilepsy Action and to learn more about the impact of epilepsy on sufferers and their families.
Shelley Morris, mother of now three-year-old son Hunter, had to battle with medical professionals to get them to take her son’s condition seriously.
Hunter had what is known as infantile spasms, or West Syndrome, which is so rare that the Royal Children’s Hospital only sees about 20 to 30 cases per year.
Shelley said Hunter’s debilitating seizures progressed very gradually and were barely noticeable at first.
It began with the occasional little shudder but over time daily spasms caused him to cry and they began to emerge in clusters.
One month later he was having four to five spasms each day.
“I knew something wasn’t right, but each time I took him to my local GP I wasn’t taken seriously”, Shelley said.
“They told me to ignore it, or that I was overreacting.
“I had to fight for everything every step of the way.”
When doctors finally had a closer look, Hunter was immediately put on heavy steroid treatment to counteract the effects that the seizures were having on his cognitive development.
The biggest concern around Hunter’s lapse in diagnosis is the possible damage that it could have done to his brain if left unattended for much longer.
“Infantile spasms can cause serious brain damage, we are one of the lucky ones who got on top of treatment early enough to prevent permanent damage.”
Shelley wants to use her experiences to raise awareness and educate others about the dire need for early intervention.
She will be hosting her own E-Tea fundraiser for epilepsy and hopes that others will do the same.
“Everyone’s idea of epilepsy is the typical drop seizures but as we’ve seen with Hunter they can be a lot more subtle than that.
“That’s why I’m going to host a morning tea and I’ve been really active on the Infantile Community Discussion Page.
“I’ve also given my phone number to Epilepsy Action just in case another family are going through the same thing.
“I want people to know that they are not alone.”
For parents seeking more information, visit the Facebook groups The Infantile Spasms Community Discussion Group and West Syndrome/Infantile Spasms Australia, or infantilespasmsproject.org.
To host an E-Tea fundraiser, head to the Epilepsy Action Australia website to register the event and receive a free goodie pack to help get the fundraising started.
