We have a beautiful (kind and caring) daughter named Annabel Thrum and she is 11 years old growing up in Western Australia.

Three years ago, we started noticing changes in Annie's vision. She was finding reading difficult, couldn't recognize faces and found sports very difficult to participate in.

An eye test revealed that she was experiencing macular degeneration caused by a hereditary disease. She was referred to the Lions institute and, under the care of Professor Chen, was diagnosed with an extremely rare neurodegenerative disorder called Neuronal Ceroid Lipofuscinosis, (known as NCL for short).

Finding out that Annie had been diagnosed with this life changing disease was absolutely devastating, no words can describe the pain and helplessness felt as parents. Professor Chen explained to us that there was no cure at this time, which was heart breaking as a parent to know that there is nothing you can do to help your child.

Annie's eyesight rapidly declined and now, although she still has some vision, has been classed as legally blind.

Since this diagnosis Annie has experienced trauma that no child should have to go through, not only medically, but also socially.

Annie can no longer participate in day-to-day activities like reading a book, riding a bike, running, climbing trees, playing sport, or even going to the park with her friends without having supervision.

Learning at school has also been extremely challenging, both for the school trying to have the education department recognize Annie's need for specialized technology and assistance so she can continue to learn, but also with Annie having to adjust to the drastic changes in her learning methods and social life.

Annie has learned to adapt to these new challenges in her life with a positive mindset, although for a period of time has suffered from extreme anxiety and depression along with feelings of just being scared, and not fitting in.

Over time she has come to terms with her diagnosis; however, she doesn't understand the full impact her condition will have on her future and independence.

Annabels has big dreams for her future; she wants to make a difference in this world. She is passionate about wildlife, the planet and helping people. Her goals, as she gets older, are to be a Marine Biologist, specializing in sharks. She also wants to be a therapist, helping children with visual impairments

A week ago, we went to the Lions Institute for our 6 monthly check up. Once they had conducted the testing to understand the rate of degradation to Annabel's eyesight, Professor Chen informed us that Stem Cell Therapy has been developed that will arrest Annabel's current condition and will reverse the damage to the cells in her eyes that are still alive.

We were told at the beginning of this journey, that stem cell therapy would be our only hope of treating this disease. We thought that this type of therapy wouldn't be available for years, if ever.

Receiving the news that the therapy has been developed is like a miracle for us, it is what we have been hoping and praying for the last 3 years.

The issue here is that Annabel's condition is so rare, pharmaceutical companies will not invest in this therapy due to the fact that it is not economically and commercially viable to do so.

The option we must take is to raise the funds required to create the solution and have it developed privately.

Annabel's condition will only deteriorate further as time goes on and so, we are asking all of you to help us bring our daughters vision back for her so that she can experience life the way that any child should be able to.

The treatment will cost $2.5M AUD which is a lot of money.

We are seeking as much support as possible to assist Annie in receiving this life changing treatment.

The funds will be donated to the Lions institute of Technology in order for the Institute to develop this therapy specifically for Annabel.

The way this is done is by taking a biopsy from Annabel and creating the protein she requires in a lab, inserting this protein into Annabels Cells and then once cultured, reinjecting them into Annabels eyes to trigger cell regeneration.

Please, please find it in your hearts to donate generously for our Annie.