As the festive season draws nearer, I wanted to share with you our latest fundraising appeal. Meet Caitlyn and her best friend Brooklyn (a Ted-E-Bear). Help us give comfort and joy this Christmas through our Ted-E-Bear Connection program.
As the holiday season approaches, we are reminded that one of the best feelings in the world is giving. The positive energy is contagious. With just one act of kindness you can help change the life of a child who feels loneliness and isolation.
Your generosity allows us to give “powerful” gifts to children affected by epilepsy, who often struggle with learning difficulties and the loneliness of being different.
Helping fund our Ted-E-Bear Connection Program is one of the special ways you bring comfort and smiles to these children. But there is much more to this gift! Every cuddly Ted-E Bear sent out is accompanied by very special information resources to help a family better understand epilepsy and manage the condition. And of course, they are linked to us for ongoing support if it is needed.
Each Ted-E-Bear bear is dressed in purple (the international colour for epilepsy) and comes with a unique name and adoption certificate. And for most children, this special bear becomes the one they want to cuddle as they face more medical tests or recover from yet another distressing seizure.
Bringing Courage And Comfort
That has certainly been the case for nine-year-old Caitlyn who received her gorgeous Ted-E-Bear, Brooklyn a couple of years ago.
Her Mum, Tanya says Brooklyn the bear is “everything” to Caitlyn, and she will never forget her smile when she received the package in the mail.
“I had seen the bears on the Epilepsy Action Facebook page and knew Caitlyn would love one, but I just couldn’t afford it. I was over the moon when I found out that she qualified for a free bear.
“The day Brooklyn arrived, I honestly have never seen Caitlyn so happy. Epilepsy is a horrific disease, and Caitlyn goes through so much but when she received that bear, it was the best day ever. Nothing else mattered,” Tanya says.
Diagnosed at the age of three, Caitlyn has suffered regular convulsive seizures that often last for over five minutes.
Tanya says that at times her seizures have been truly frightening, and they have only had temporary success in controlling them with medication.
Brooklyn Is Her Best And Only Friend
Her condition has also taken its toll on her ability to make friends. Caitlyn doesn’t receive party or playdate invitations, and only a few children have been willing to play with her at school.
And that is why Brooklyn the bear has become Caitlyn’s very best and only friend in the world.
“It breaks my heart that Caitlyn doesn’t have friends. I try to explain to other parents that just by playing with Caitlyn, their child won’t get epilepsy, but they don’t listen. My eldest son also has epilepsy and the stigma and ignorance about the condition are staggering.”
Thank You for Your Generosity
For Caitlyn – a beautiful “pocket dynamite” who likes to cook, play footy, and look after her baby brother – her Ted-E-Bear, Brooklyn brings security and love to what can be a very complex world.
“When Caitlyn has seizures, it’s Brooklyn who gives her the most comfort; it’s Brooklyn who will go in the ambulance with her. These bears make such a difference,” says Tanya.
Since Epilepsy Action Australia introduced the Ted-E-Bear Connection Program in 2012, we have been able to send out nearly 1800 bears to deserving children and their siblings.
With your help, we hope to send out many more packages across Australia, to educate families and bring comfort to children with epilepsy.
This holiday season, I hope you will give the gift of giving by making a tax-deductible donation or committing to regular contributions so that we can fund crucial medical research and continue to provide our diverse and valued services.
Wishing you safe holidays, and a Happy New Year.
I wanted to share our latest Fundraising appeal with you and introduce some amazing little Superheroes who take on the challenge of epilepsy every day. These little ones amaze us and we hope you will be touched by their stories too.
Superheroes come in all shapes and sizes, and have their own set of powers and weaknesses that make them unique.
At Epilepsy Action we come across little superheroes every day – children who face the many challenges of having epilepsy, with the fabulous superpowers of courage, heroism and bravery.
Seizures may be their Kryptonite, weakening them with fatigue, anxiety and even disabilities, but just like Superman they manage to fight another day, more often than not with smiles on their faces.
I would like you to meet some of these gorgeous pint-sized fighters for whom even getting out of bed each morning can be a major struggle.
Seven-year-old “Super” Piper battles multiple seizures daily that can affect her breathing and leave her exhausted.
According to her Mum, Summer, while the seizures and recovery vary, “the one consistency is Piper’s superhuman ability to smile”.
“If we could offer an extra superpower to Piper, we’d choose strength to fuel and empower each part of Piper’s little body. The strength to hold her head into an upright position, to give her a voice, to allow her arms to embrace, and her legs to stand, run and skip alongside her siblings.
Most of all we would give her the strength to heal so she may move forward without fear of the seizures that steal her milestones and her smiles,” says Summer.
You can read more about Piper and some of our other inspirational young superheroes in the Taking Action newsletter below.
But now I’d like to introduce you to Jackson, another superhero of mega proportions.
The Incredible Hulk is Jackson’s favourite superhero and his Mum, Renee guesses it is because he is big, strong and green!
Jackson, aged 11 has an intellectual disability, autism and a complex form of epilepsy, so it’s a little tricky to know exactly why he likes this Avenger, but he insists on sleeping with a Hulk toy each night.
“Jackson is a gorgeous, happy-go-lucky child. He’s has all these issues but they don’t matter to him. Despite his disabilities, he still wakes up with a smile on his face every single day, and just loves life,” Renee says.
While Renee is grateful that her son copes so well with life in general, she would like to have her own superpowers to help him if she could.
“I know life is going to get harder for him so I would like to be able to see into the future and learn how to best help Jackson as he gets older. And I’d like to be able to give him some close friends.”
Since his diagnosis at just over two years of age, Jackson has had “hundreds of seizures” of many different types contributing to his numerous developmental issues.
Epilepsy Action has been a major part of Renee and husband Tyrone’s support team, especially in the early years of diagnosis when they were also coping with Jackson’s baby sister Charlotte.
“It was a major juggle with both children being under the age of three, so I relied a lot on Epilepsy Action. Jackson was having a number of different types of seizures on a regular basis and I’d ring the nurses to ask advice on what type they were and whether we should go to the hospital. I’m really grateful for all the help they have given us,” she says.
Our nurse educators have also assisted with providing comforting Ted-E-Bears for Jackson and Charlotte, and developed tailored seizure management plans to assist those who care for him.
Just like superheroes, you are helping make a better world for those with epilepsy through your donations.
Because of your gift we can assist our little superheroes and their families in so many ways, like funding our nurse educators and supporting research into medications desperately needed to help control seizures.
Please make a tax-deductible donation or commit to regular contributions so that we can continue to help children like Jackson and Piper fly higher, fight harder and keep smiling.
With many thanks in advance,
Click below to read more in our Taking Action Newsletter.