My name is Tanya and I have had the opportunity to receive some amazing support through Ability Care, with two amazing carers, Kate and now Trish.
Ability Care’s services came at a very crucial time for my family, as Ruby who has Prader-Willi syndrome spends a lot of time in hospital, and if not in hospital can fall sick at a drop of a hat and at the most unexpected times. What has been amazing for me personally is the quick and helpful way Ability has worked with me, to care enough for my well being as well as my daughters, and cared for both of us. Not only do the ladies take their job very seriously, and care for Ruby in the most loving and professional way – as I have no hesitation to go out or sleep and leave Ruby in their very capable hands = knowing that the ladies know her routines, how to fix any problem, how to use all her machinery, to watch for signs of struggle that I have made them aware of and most of all, love her and play with her, teach her and treat her like a ‘normal’ little toddler with feelings and personality of her own. Ruby has grown to love her carers very much which is such a relief for any mother but especially one that has so much going on and dealing with my own health issues too, having had the pleasure of two amazing ladies that I can trust whole heartedly with my child’s life is a HUGE thing! One of the services that I am most grateful for is when Ruby has been in hospital, I have had 4 hours sleep in 3 days, and Ability Care has sent the ladies to the hospital to do their shift, to allow me to either drive home to see my other children and have a rest or simply pass out at the hospital knowing there was a carer there to watch her, as up until 3 weeks ago, Ruby could not talk or walk or hardly move, and her situation could go from ok to really bad within 1/2hr and that is way I would never leave her. Knowing someone was there to support me and know Ruby and understand her without being able to talk, meant I could close my eyes or go home for a few hours without stressing or panicking something may happen that the hospital would miss and I would not be there.
The flexibility of allowing me to ring and say I am in hospital with Ruby so instead of this day or these hours could I possibly have this time instead, or instead of care being at home could it be at the hospital – has been more than words can express, and where things have been very bad and very stressful, where possible and hours have been available the service has helped me where ever they can, and for that I will always be truly grateful.
Tanya, Zara, Najè and Ruby J
This is just one of the beautiful letters we receive from our wonderful families. Ability Care try and support each family not only by supporting their loved ones, but also in ways such as fundraising.
Ruby has been diagnosed with Prada Willi Syndrome and this affects Ruby in various ways, and as she becomes older, she will face more struggles in her life. At the moment, Ruby has been affected by the Prada Willi in the following ways:
- Respiratory difficulties
- Low immune system
- Food cravings
- Weight gain
- Sleeping difficulties
- Caught Golden Staph
- Delayed motor development
- Speech delay
- Currently Peg Fed
The above is only an over view which Ruby who is only 3 years of age is experiencing. Ruby has had over 100 hospital stays and this has a huge impact on her family including her two sisters.
Tanya is currently fundraising to create a Wellness centre not only for Ruby, but other young children who have a low immune system and rare disabilities.
This Wellness centre will contain a solar Hydro Pool, Chill out area, and play areas which will assist the children with their motor development. As Tanya has not got land to build this on, she is donating her own property to have this built on.
The project will cost at least $150,000. Tanya has currently raised $19,000, but needs more support to assist her with her dream. Tanya is also hoping that someone will donate their time and machinery to assist with building the Wellness Centre.
To read more about Pradi Willi and how it affects the person and the people in their lives, visit Prader-Willi Syndrome Association of Australia
If you would like to donate your time or assist with fundraising, please contact Marcia on 0448 944 891 or firstname.lastname@example.org