This Project is Sponsored by The Lions Club of Killarney Bateau Inc .
The Peat Family need your help!
We are trying to raise enough funds to purchase a new car so that it can be modified to house Bailey's wheelchair. The NDIS have special funding to help with the cost of the modification however they have very specific guidelindes on what is an acceptable car to be converted. Unfortunately due to Bailey's medical condition and Michael's (Bailey's dad) on going battle with cancer, the Peat Family is not in a financial position to purchase a new car. We are hoping to raise enough money so this family can buy a car which is an essential need.
Please read the Peat's story below....
Bailey is currently in Year 1 , and was born with a genetic condition which inhibits her muscle strength, she has very low muscle tone which causes a weakness and frailty throughout her entire body. Bailey can not stand for more than a couple of minutes, is unable to dress or toilet by herself, unable to ascend or descend steps, has difficulty gripping items and limited crawling ability. Due to her condition, her bones are very frail and thin which has, and will continue to cause significant breaks. This also causes her to have weak respiratory muscles which lead to chest infections on a regular basis. These weaknesses affect her oral muscles including those required to chew and swallow, as a result she requires gastrostomy tube feeding. In September, this year she underwent a major back operation to insert spinal growth rods in her back due to scoliosis. She is now having intensive physiotherapy. A significant emotional and financial cost for Bailey and the whole Peat family.
Michael, Bailey’s father, has been unable to lift her weight for some time. Unfortunately, he was diagnosed with Kidney Cancer in 2013, when Bailey was 3. The kidney was removed however, the cancer had already moved to his lungs as a secondary cancer. He has been on multiple medications and chemotherapy for the last 4 years and with muscle degradation as a side effect, he is unable to provide assistance with Bailey’s needs as he is not strong enough to lift Bailey.
Michael braves the commute to work in Sydney every day that he is well enough to, highlighting that even in a physically weaker state, he tries to ensure financial support for his family. Some days he drives to Prince of Wales Hospital for a round of chemotherapy, then drives to work at Homebush and then returns to the Central Coast as financially he can not afford to be off work. In a tragic turn of events for the Peats, they have recently received news that Michael’s cancer has returned and spread further, meaning his capacity to continue this may be limited. He underwent surgery at the same time as Bailey had her back surgery and had 2 weeks off work before returning.
Compounding the daily struggles facing Bailey and the Peats, she requires multiple visits to a wide range of doctors both locally and at Westmead Childrens’ Hospital. Some of these include Neurogenetics, Orthopaedics, Paediatrician, GP, Physiotherapy, Occupational Therapy, Cardiology, feeding clinic, sleep studies, MRI’s and xrays. In addition to these regular visits she is also required to have the growth rods magnetically increased once a month at Westmead Hospital. Should an additional injury or health problem occur such as a fracture or chest infection these can increase the frequency of the visits required.
The only way to meet all of these needs for Bailey is for her mother, Sonya, to lift Bailey in and out of the car. Sonya has to perform multiple functions every day where she is required to support and lift Bailey’s full weight and carry, twist, bend and manipulate Bailey through showering, going to the toilet, dressing and feeding. Bailey’s access to her world is fully dependent on Sonya’s health and ability to bear Bailey’s weight. As Bailey is becoming heavier, the likelihood of Sonya not being strong enough to lift Bailey, or sustaining a back injury increases significantly and therefore Bailey is at greater risk of not having access to medical appointments, her education and interaction with peers.
Sonya has tried to contribute financially since Bailey started school in 2016 to ease some of the financial pressure however it is just too difficult. She needs to be available to drop Bailey to school in the morning, pick her up in the afternoon, drive her to Sydney for numerous medical appointments and sometimes be available to assist with toileting at school. The most flexible and accommodating workplaces were unable to accommodate this situation. So the financial pressure and strain falls solely on Michael, who despite all this has continued to serve his community as a patrol member of Terrigal Surf Life Saving Club and a coach to younger athletes in the sport he is passionate about, Surfboat Rowing.
Currently Bailey weighs 22kg. This means multiple times a day Sonya is lifting her daughter of 22kg into and out of the car. There is funding through the NDIS for vehicle modifications to accommodate her wheelchair. However, this funding is only for the modifications and the NDIS require a car to be less than 3 years old (their current car is much older than this), it must meet strict guidelines including maintenance history and mileage of less than 43,000km. Therefore a brand new car is the best option. The car would need to be converted to accommodate her wheelchair and fit the many other pieces of equipment that she needs on a daily basis including powered wheelchair, walking frame, kidwalker.
It has been so long since Sonya was anything other than full time carer for Bailey that she can’t even remember what her own passions and hobbies are. Bailey on the other hand is a bright spark eager to engage with the world far beyond the physical capabilities of her body. Your involvement will help secure Bailey’s future and provide some light and relief for a very strong, yet overwhelmingly burdened family.
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