Accessible Modifications for Jess

Neurofibromatosis type 1 is a condition characterized by changes in skin coloring (pigmentation) and the growth of tumors along nerves in the skin, brain, and other parts of the body. About 50% of people with NF1 also have learning challenges. Softening and curving of bones, tumors develop in the brain, on cranial nerves, or on the spinal cord. While NF tumors are generally not cancerous, they may cause health problems by pressing on nearby body tissue, causing chronic pain and even paralysation.  
This is what my eldest daughter Jess suffers with, NF type 1 and now a astocytoma.  All her life she has been in and out of hospital getting tumours removed, neck, kidneys, spinal cord, arms and breasts. Having blood transfusions and staying in the ICU.
 Jess is only 19 years old and has just started first year at uni. Jess is just trying to live a normal life with out pain and to still have some independence.
About a month ago, Jess got told that she had an inoperable brain tumour, a grade 2 astrocytoma ('diffuse astrocytoma') plus on top of this Jess also has 3  spinal cord tumours, 50 tumours in her abdominal  area , 4 in her leg and one in her ankle. Jess now has to be given radiotherapy to kill off any tumour cells and then a course of chemotherapy,
Jess is now stuggling in doing basic things, due to the pain that all these tumours are causing. To help out our little girl to have a shower properly we have to do our bathroom area up to accommodate,  and make it lager to install grab bars to assist with stability when Jess is getting into or out of the shower as well as balance while standing in the shower. A shower chair for Jess to help her with feeling safe and Stabilise as well  a place to rest for when she is in so much pain. Jess haves difficulty standing for long periods of time due to the chronic pain in her spinal cord, legs, ankle and stomach area. We also have to allow room for a wheelchair for when Jess starts her treatment. If you could please help out we and Jess would much appreciate it. I am only on a Disability Support Pension and have 3 other childern with this condition and other disabilities.  So am in the hospital 4 days a week, everyweek. what ever you can give or help out with would be great and appreciated. thanking you so much to give this young girl, Jess a chance to live a normal life, to give Jess back some independence and privacy in doing the basic thing of having a shower. 
Please could you share and thank you so much.

Donations (9)

  • Ann Hallett
    • $500 
    • 6 yrs


Kirst James
Mawson Lakes SA

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