Our lovely son, Tom, has fought lots of battles, yet still smiles and laughs so much. Born premature at 27 weeks, with many complications and multiple disabilities, our brave boy has undergone over 60 surgeries. Tom has proved and continues to prove countless people wrong about his abilities, in fact he strives to achieve anything he sets his mind to and thrives because he gets on with it and gets it done.
Tom has a complicated head shunt joined in 2 places which cannot be knocked. This is tricky as Tom is severely vision impaired and wears glasses only to protect his eyes from bumps too. Tom is also hearing impaired but refuses to wear a hearing aide; he is pitch perfect and he cannot handle the adjustments to sounds.
Turning 13 this month, Tom is very slight in stature and weight. He has trouble with chewing and swallowing lots of foods and can be tactile sensitive. Missing all his carpel bones, with some joint abnormalities and low muscle tone, makes breaking a fall difficult to protect his head and eyes. Tom has quite a weak core and would benefit greatly from some equipment to assist him building his core muscles and gaining some strength. It would also help him with his lower limbs and being more stable walking on uneven ground, particularly as he cannot see where he is going. Among other disabilities, Tom falls on the Autism Spectrum (to make life just a little more interesting).
His achievements so far have astounded us. Tom absolutely loves music and learns the piano through Skype lessons. Computers and technology is also a love of his, which is fabulous as they are the tools he needs. Tom has been granted an assistance dog. Tom is a first to have an assistance dog (not a Guide dog), where he is the actual guide, not the dog. Starting high school this year has been a year long process of orientation and mobility and more work still needs to be done. We have used Daniel Kish from World Access for the Blind with great success and we would dearly love to engage his services again as he will be here in April.
Our families’ financial resources have been greatly impacted, with caring responsibilities, ongoing medical appointments to several specialists, personal and physical development and education needs, it is a fulltime job. Trying to provide Tom with what he really needs is a challenge when we only have one income coming in to our household.
We are so appreciative of people’s generosity and would dearly like to seek some support for some items that will have a great impact in assisting us. At high school, to help him keep up, Tom really needs some computer equipment and assistive technology, Orientation and Mobility training at school and camp, some cognitive sensory learning therapy with physio, resources, appropriate weekend support shoes, special training crates and storage. These are all things that are currently out of reach for us. We are very grateful for any support we may receive in helping us make a big difference for Tom and his future. Thank you for your time and support.
Regards, Karen, John & Tom Goldsworthy
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