Family fundraises despite adversity
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A Father's passionate plea for good luck comes following one of his children being struck down with a mystery illness. The family already works hard to care for their middle child who suffers with severe cerebral palsy.
Ashley Walker wrote his plea on Facebook saying:
I'm a father of five, our middle child has Severe Cerebral Palsy and is cared for by her brilliant Mother and Sisters with help from our awesome Carers. We built a basic special home and care for Kayla Koo Walker. We fundraise every year for PMH children's hospital to help people wherever we can. I have always worked and still constantly have bad luck now our second eldest has been struck down with a mystery illness and will lose her eyesight. We just want some good luck.
Despite all this, the family works hard annually to raise funds for the PMH Foundation who supports the family through Kayla's visits to Perth for medical treatment.
Commencing in 2013, Kayla’s Christmas Lights was started in order to provide a lasting tribute from the Walker Family for their 10 year old daughter and sister, Kayla is no longer palliative as of February this year and isn’t ventilated anymore. The lights are now a celebration of Kayla’s Life and Strength.
Kayla was born prematurely in 2008 with a virus in her brain which has left her with Cerebral Palsy (Quadriplegia – which in turn means she has no head, neck or limb control), wheelchair bound for life, epilepsy and multiple complex care requirements such as a tracheostomy (a tube in her neck which is her airway), a PEG (for nutritional support – this is a tube inserted into Kaylas stomach) and an infusaport (this is intravenous access for medications, taking bloods etc which I do myself at home as to reduce the amount of time Kayla is hospital).
"In its first year Kayla’s Christmas Lights raised a whopping $11,800 for the PMH Foundation as a part of the PMH Foundation's Christmas Lights Campaign.
The Walker House is on Strathalbyn Road in Geraldton and has a massive 88 metres of road frontage on a corner block making it the perfect location for families and visitors young and old to marvel at hundreds of kilometers of lights. Christmas Eve (2013) it was estimated that over 2000 locals visited leaving donations over $1200.
2015 will be the last opportunity to raise funds for the PMH Foundation due to the much anticipated move to Perth Children’s Hospital which is expected to take place in April 2016.
Mother Nic Walker said when Kayla was first diagnosed doctors didn’t expect Kayla to live long and prepared us to take her home to die.
"The outlook should she survive was bleak, as they believed Kayla would never recognize us, respond to stimulation and basically endure a short life in a vegetative state.
"Despite such a poor prognosis and multiple bumps in the road Kayla is a beautiful little 11 year old with a very outgoing personality, Kayla knows who we are, responds appropriately emotionally and follows our every move with eye movement and a little head control.
"This year Kayla has spent 5 months in Perth with inoperable scoliosis to her spine, which saw her unable to even sit in her wheelchair due to her pelvis being wedged under her rib cage. Surgery was deemed too dangerous and during the investigations it was discovered Kayla had multiple clots throughout her major blood vessels which have been left permanently damaged, however with a bit of research and the financial support of the local community via Kayla’s Go Fund Me page we obtained a special suit and with day physio has allowed Kayla to sit up again and even attend school for the first time in 3 years.
"Every year we switch on our lights on the 1st of December however this year our celebration of Kayla’s life was delayed when our 15 year old daughter Storm began experiencing extreme eye pain. Our optometrist discovered Storm has a condition called Bilateral Hemianopia which in most cases is caused by a tumour of the pituitary gland at the base of the brain. This time it was Storm who was rushed down to Perth and we were told the devastating news that Storm has permanently lost most of her peripheral vision and the doctors are unable to isolate the cause or get the worsening pain under control.
"As a family we are so grateful to the PMH Foundation for their support over the years and really want this year to be successful in our fundraising, it will make all the effort we have put into our display worthwhile and bring us a lot of joy to know that we are still making a difference to other families like ours," she said.
