The Road Unseen
Donation protected
We are Tanya and Mackenzie Savva - mumma/daughter duo travelling ‘The Road Unseen’. We work tirelessly together to find light in the dark as I support Mackenzie, now 7, to reach developmental outcomes despite her blindness and intellectual disability.
Mackenzie's brain did not develop properly and she was diagnosed with Septo Optic Dysplasia at 6 weeks of age. She is blind, relies on hormone replacement therapy to survive (medicated 7 x day), and continues to be in need of daily physical, cognitive and sensory therapy to help her live a 'normal' life.
Please watch and enjoy this video detailing the drive behind The Road Unseen, and to see Kenz in all her wondrous and beautiful light xx
Her diagnosis presents many challenges and in the past 12 months I’ve realised that despite the many hurdles she has overcome, she continues to suffer and needs more from me to help her to continue to shine. I have quit my job as an Occupational Therapist so I can offer her my full attention, time, knowledge, and love to give her an intense period of physical and cognitive therapy and academic education to support her ongoing development and reduce her suffering.
Unfortunately, there are significant financial responsibilities that I am unable to meet as a single parent home schooling and providing daily therapy. The best option for us is to minimise the environment and lifestyle we live and I have decided to move into a motorhome for 6 months from May 2016. We will be travelling during that time to limit the usual distractions from familiar surroundings and offer a small and unique environment for her to reach her potential. I am hoping the freedom, loss of daily commitments, new space, and time will allow her to reach her goals and support her to become an independent, strong, and capable young woman.
Some of the goals we have include:
- To independently dress herself
- To independently toilet (ever tried to wipe your bottom without sight?!)
- To get herself a snack independently and learn to make toast
- To increase strength and coordination of her fingers to participate in everyday activities (such as brushing teeth, using cutlery, playing the keyboard, doing up zippers and buttons, and doing school work)
- To step up and down 2 x consecutive 10-15cm steps without a rail or physical support (she has low muscle tone and weak and uncoordinated limbs) - To minimise the effects of her sensory sensitivities to allow her to engage in activities free of fear and anxiety
- To recognise the alphabet in braille and be able to braille all letters with 80% accuracy (the level of skill required is phenomenal - I cannot even do this with vision!)
- To meet 75-85% of the key learning areas for Grade 1 under the Australian national curriculum for learning
- To write a children's book about the adventures Kenz embarks on and her experiences of these activities without sight to encourage others to use all the senses to experience the world!
- To share the reality of living with blindness or low vision and reach out to others in need of support
- To increase awareness of the services available through Vision Australia who support people living with low vision and blindness
Living in a motorhome will create a safe haven for Mackenzie’s growth. Resources required for school, therapy equipment, suitable equipment for seating to support her postural limitations, travel costs, braille equipment, medications, and time away from the stability of an income so I can give her everything she needs, cannot be provided without your support.
WE NEED YOU!
Your generosity will:
- Increase functional and developmental outcomes for Mackenzie. You will make a direct impact on her life and support her to reach the goal of being an independent young woman!
- Give me the time to meet her needs. As an OT, massage therapist and yoga instructor I am well equipped with the knowledge and skills to support her…I just need the time
- Allow us to reach others facing similar challenges. So many parents and children live with the adversity caused by disabilities and I will make every effort to reach out to those in need of support and encourage them to believe that they have the ability to make a difference
- Increase awareness of the services available through Vision Australia who are supporting people who are blind or have low vision to live the life they choose, just like Mackenzie
We are blogging our journey at The Road Unseen You can read all about us, the challenges we've faced so far, and the road that will unfold before us, continuing to find light in the dark since we received the news of her diagnosis 7 years ago. You can also watch and share in our journey on Facebook at 'The Road Unseen' and Instagram @theroadunseen and we look forward to having you along for the ride!
Your generosity will be met with the utmost of gratitude, love, light and thanks. To everyone that has, will, and continues to uplift us, we are forever in your debt.
Tan and Kenz xx
Mackenzie's brain did not develop properly and she was diagnosed with Septo Optic Dysplasia at 6 weeks of age. She is blind, relies on hormone replacement therapy to survive (medicated 7 x day), and continues to be in need of daily physical, cognitive and sensory therapy to help her live a 'normal' life.
Please watch and enjoy this video detailing the drive behind The Road Unseen, and to see Kenz in all her wondrous and beautiful light xx
Her diagnosis presents many challenges and in the past 12 months I’ve realised that despite the many hurdles she has overcome, she continues to suffer and needs more from me to help her to continue to shine. I have quit my job as an Occupational Therapist so I can offer her my full attention, time, knowledge, and love to give her an intense period of physical and cognitive therapy and academic education to support her ongoing development and reduce her suffering.
Unfortunately, there are significant financial responsibilities that I am unable to meet as a single parent home schooling and providing daily therapy. The best option for us is to minimise the environment and lifestyle we live and I have decided to move into a motorhome for 6 months from May 2016. We will be travelling during that time to limit the usual distractions from familiar surroundings and offer a small and unique environment for her to reach her potential. I am hoping the freedom, loss of daily commitments, new space, and time will allow her to reach her goals and support her to become an independent, strong, and capable young woman.
Some of the goals we have include:
- To independently dress herself
- To independently toilet (ever tried to wipe your bottom without sight?!)
- To get herself a snack independently and learn to make toast
- To increase strength and coordination of her fingers to participate in everyday activities (such as brushing teeth, using cutlery, playing the keyboard, doing up zippers and buttons, and doing school work)
- To step up and down 2 x consecutive 10-15cm steps without a rail or physical support (she has low muscle tone and weak and uncoordinated limbs) - To minimise the effects of her sensory sensitivities to allow her to engage in activities free of fear and anxiety
- To recognise the alphabet in braille and be able to braille all letters with 80% accuracy (the level of skill required is phenomenal - I cannot even do this with vision!)
- To meet 75-85% of the key learning areas for Grade 1 under the Australian national curriculum for learning
- To write a children's book about the adventures Kenz embarks on and her experiences of these activities without sight to encourage others to use all the senses to experience the world!
- To share the reality of living with blindness or low vision and reach out to others in need of support
- To increase awareness of the services available through Vision Australia who support people living with low vision and blindness
Living in a motorhome will create a safe haven for Mackenzie’s growth. Resources required for school, therapy equipment, suitable equipment for seating to support her postural limitations, travel costs, braille equipment, medications, and time away from the stability of an income so I can give her everything she needs, cannot be provided without your support.
WE NEED YOU!
Your generosity will:
- Increase functional and developmental outcomes for Mackenzie. You will make a direct impact on her life and support her to reach the goal of being an independent young woman!
- Give me the time to meet her needs. As an OT, massage therapist and yoga instructor I am well equipped with the knowledge and skills to support her…I just need the time
- Allow us to reach others facing similar challenges. So many parents and children live with the adversity caused by disabilities and I will make every effort to reach out to those in need of support and encourage them to believe that they have the ability to make a difference
- Increase awareness of the services available through Vision Australia who are supporting people who are blind or have low vision to live the life they choose, just like Mackenzie
We are blogging our journey at The Road Unseen You can read all about us, the challenges we've faced so far, and the road that will unfold before us, continuing to find light in the dark since we received the news of her diagnosis 7 years ago. You can also watch and share in our journey on Facebook at 'The Road Unseen' and Instagram @theroadunseen and we look forward to having you along for the ride!
Your generosity will be met with the utmost of gratitude, love, light and thanks. To everyone that has, will, and continues to uplift us, we are forever in your debt.
Tan and Kenz xx
Organizer
Tan Savvy
Organizer
Ermington NSW
