The little things in life make a big difference for Daniel Mayer, or ‘D-Dog’ as he is known to his friends at Pelaw Main Public School.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
Diagnosed with an incurable genetic condition called Ataxia telangiectasia (AT), one of the most valuable thing to Daniel and his family is time.
The rare disease progressively destroys part of the motor control area of the brain, leading to a lack of balance and co-ordination.
Nine-year-old Daniel is one of only 35 children in Australia with AT and while he battles the condition, his mother Judy is also fighting cancer.
Six days after Daniel’s diagnosis in 2009, Judy was told she had breast cancer and underwent a mastectomy not long after followed by chemotherapy and radiation treatment.
In 2012 she also underwent a Latimus Dorsi Flap reconstruction followed by two more reconstructive surgeries in 2013.
Then, after experience neck pains an X-ray revealed that cancer had damaged two of Judy’s vertebra.
She then underwent surgery to insert rods and screws into her skull and spine to help support her head.
Unfortunately, Judy was informed that the cancer had spread to her bones.
As bone cancer is not curable, only manageable, she said that fulfilling Daniel’s dream of visiting Disneyland became a top priority.
To help fund the trip Judy’s sister-in-law Leah Armstrong set up a GoFundMe page which raised a staggering $20,000.
Judy said that the family, including her husband Scott and eldest son Michael, have been completely overwhelmed with the support they have received.
“This was so unexpected and just floored us with humility,” she said.
“Because of everyone’s generosity Disneyland has become a reality.
“Our passports have been organised and we will be booking our holiday for hopefully just after Easter this year.
“We have received donations from complete strangers that have knocked on our door, to the plastic surgeon that did my operations.
“It’s just been amazing.”
Judy said that it is very important that they get Daniel to Disneyland as soon as possible.
“At this stage Daniel is not 100 per cent reliable on his wheelchair,” she said.
“We don’t know how long he has until he will be restricted so we want to get him to Disneyland while he is still able to get on the rides.”
Helping the Mayer family along the way has also been the Cessnock branch of Wheeling and Able (formerly Crippled Children), which provides assistance to children and young people (up to 21 years) with physical disabilities.
The organisation was founded in 1932 as the Newcastle and District Association for Crippled Children.
When Daniel needed improvements to his wheelchair made, Judy said it was like Wheeling and Able clicked their fingers and the solution was there.
“Daniel gets fatigued very quickly so it is really important that we keep his as comfortable as possible,” she said.
“Even little things like making sure his head is supported properly can be a challenge.”
Thanks to donations from Wheeling and Able, Daniel’s wheelchair was able to be fitted with the correct lateral supports as well as new solid wheels.
Judy said the improvements were made in December and it was like an early Christmas present for the family.
The charity also paid for a speech support application, Proloquo2go for Daniel’s iPad.
Daniel was able to use the application during a speech on Captain Cook that he presented to his class as part of a school assignment.
***
Cessnock’s Wheeling and Able are currently looking for volunteers – for more information call 4991 5105.
