Hope for Holly Burns
Donation protected
When my niece Holly was 19months old she was diagnosed with an extremely rare genetic and terminal condition called Vanishing White Matter Leukodystrophy. As Holly has grown she has lost many of her abilities to do things for herself, needing one on one care 24/7 and a lot of equipment to help her in her day to day life, a life that will be cut short due to this horrendous disease.
It’s absolutely heart breaking to watch such a beautiful child deteriorate in front of your eyes. From being able to move around, to needing to be carried everywhere and being wheelchair bound.
Knowing what lies ahead for Holly is scary, but we aim to help her live life to the fullest before she loses her eyesight, hearing, all motor control and eventually unable to breathe on her own as her body slowly shuts down.
With all that being said Holly is such an amazing little girl with a pure heart. Always happy for everyone else and never complains, even when she misses out on so much.
It is for this reason that I am going to shave my head to help Holly. All donations will go to helping Holly life her best life possible.
Please help us help Holly.
It’s absolutely heart breaking to watch such a beautiful child deteriorate in front of your eyes. From being able to move around, to needing to be carried everywhere and being wheelchair bound.
Knowing what lies ahead for Holly is scary, but we aim to help her live life to the fullest before she loses her eyesight, hearing, all motor control and eventually unable to breathe on her own as her body slowly shuts down.
With all that being said Holly is such an amazing little girl with a pure heart. Always happy for everyone else and never complains, even when she misses out on so much.
It is for this reason that I am going to shave my head to help Holly. All donations will go to helping Holly life her best life possible.
Please help us help Holly.
Organiser
Amanda Burns
Organiser
