Jogging in Jammies for Liv is a treadmill challenge happening this Sunday in Maffra, to raise awareness and funds for Very Special Kids.
After registering to take part, all you have to do is dress in your jimjams and run/walk on a treadmill at R3 Fitness in Maffra for 30 minutes.
Very Special Kids cares for children with life-threatening conditions by providing a children’s hospice and professional family support services. They help around 850 families across Victoria with ongoing support from diagnosis all the way through to recovery and bereavement.
One such local family is the Reads. 12 year old Olivia has development delay, epilepsy and Wolff Parkinson White Syndrome. Sunday’s Jogging in Jammies for Liv is named for her – there is more about her below. The event will help Olivia and many other children like her.
Jogging in Jammies for Liv will raise funds to help with the running of Very Special Kids‘ facilities. It costs more than $7 million each year to operate Very Special Kids and they rely substantially on generous fundraising support from corporates and the community, to provide their services free-of-charge to families.
Anyone is welcome to join in the walk at R3 Fitness, 192 Johnson St, Maffra. It’s $20 and you can register or donate here: my.24hourchallenge.org.au/2021-challenge/tanya-read/donate
There will be raffles on the day with prizes from local businesses, as well as a barbecue and refreshments.
Below: Tanya Read writes about 12 year old Olivia and Very Special Kids
Information provided by Tanya Read about 12 year old Olivia:
Olivia has development delay, epilepsy and Wolff Parkinson White Syndrome.
A growth spurt after hitting puberty has increased her seizures and a specialist suggested a Vagus Nerve Stimulator (VNS) implantation. This is a device used to treat seizures when seizure drugs are not effective and surgery is not possible. VNS consists of a pacemaker-like generator that is implanted in the chest wall and is programmed by the physician to stimulate the vagus nerve in the neck.
Olivia was accepted into a VNS trial, which led to surgery in December 2019 with the hope that it would help reduce the severity of the seizures.
Liv has regular appointments with her neurologist to check the device. She had been seizure-free for some months but recently, with no warning, seizures began again.
Olivia is nonverbal. However, through her facial expressions, body language and gestures, we have learnt what she is asking for. This ranges from letting us know she is hungry, tired, enjoying what she is doing or doesn’t like it. She enjoys going to going to school and catching the bus.
She is definitely a very persistent girl, determined that when she wants something, she sets her mind to it. Most of all she is happy and loves to be around people.
Very Special Kids is an amazing organisation and the support they provide has made a huge difference to our family, and we are extremely grateful.
Olivia has special needs and we have found that the staff at Very Special Kids are very caring and considerate when she is there for Hospice. Each time we go in, Olivia is all smiles and heads straight to the multi-sensory room. The enjoyment and expressions on her face is a pleasure to watch.
The staff, both in the hospice and in the organisation, give their time to actually engage with Olivia, and watching the interaction is priceless. It means so much to us knowing that Olivia is in a happy and safe environment with staff who are trained and provide specialised care to her.
Although Olivia does not give much back to people, which makes it a challenge for her to communicate and socialise, the staff have a way to get through to her, put her at ease, relax and be happy to interact with them.
Olivia stays at the hospice several times a year, where she has participated in a school holiday program that involves special guests, music, arts and craft.
Our family and friends continue to support us, as they understand Olivia’s needs. We are fortunate to have them close by and their love and support is incredible.
Before our involvement with Very Special Kids, we could not have ever imagined having a holiday or even a weekend away. Thanks to VSK we have been able to have a balance in our work and family life and this has been very beneficial to us all.
We cannot thank them enough for the difference they have made in our life.