Jayden has already lost his night vision, if he goes into a low lit room, he can't see anything. Tahlia is also showing signs of this as well. Jayden has the double whammy of losing his visual acquity. What you can see at 36 metres, he can only see at 6 metres (6/36).
Tahlia's images of her eyes show advanced stages of RP, her progression is very quick and nasty. Reports from her treatment team suggest she has less than 10 degrees vision (this makes her legally blind at 3)
There is no treatment or cure for RP, both these kids are going to lose their vision quickly, as their onset is already rapid.
So, we are trying to create a sight bucket list for the kids before they are at the point of not being able to see. Think about all the experiences you may have had as a child or even adult, think about the amazing places you have been able to see, just because you can see. We would love for the kids to be able to have as many visual memories as possible so that when their sight does deteriorate they can have things to remember. For example when someone makes a comment about what something looks like, they can appreciate it.
To top it off, Tahlia us recently been diagnosed with epilepsy, so we are mindful that we would like to get her to experience the thrills of the rides and slides in case we are unable to gain control of her seizures. She is certainly our little adrenaline junky!
Jayden is a very intelligent little man, being an avid reader (yes I mean avid, he was reading at 3) and is mad about oceans, animals, countries and buildings.
Locally he said he would like to see the Sydeny Opera House and Sydney Harbour Bridge, he wants to feed and pat a dolphin as well as see whales in the Pacific Ocean. Oh he has also said he would love to see a Panda (but not in China because the speak Mandarin and he doesn't know enough mandarin haha)
This is great, but there is so much more that we would love for them to see. Most kids have dreams of going to Disney Land (or World), seeing the Grand Canyon or visitng Harry Potter Land. Or for Jayden, sights like the Colosseum or Eiffel Tower are things that excite him.
As parents we are very appreciative that they are healthy, but with such an early onset of this condition, and being advised that their conidtion is rapidly progressing, it is important for us to give them as many visual memories as possible.
Please help us get these kids to create the ultimate sight bucket list and be able to fulfill it.
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