Meg’s Disney wish

One of Millea’s very close friends, Meg, is severely visually impaired and is losing the little sight she has left. Recently, Meg’s parents asked her for a bucket list of things she’d like to do before she lost her vision. Most of the items they are able to work through, but one of the things is something Meg is desperate to do before her sight goes completely, they have been talking about for years, but may never be able to afford, and that is to get Meg to Disneyland. Sadly it would appear they are running out of time, and looks like they may never be able to fulfil her biggest wish.

A bit about Meg’s condition:

Meg was born with WAGR Syndrome, an extremely rare genetic condition, which affects only 1 in 4 million people.

Among the 150 or so medical conditions linked to WAGR is Aniridia, which Meg was born with. Aniridia means that Meg was born without irises - the coloured parts of the eye. The iris performs a lot of tasks people are unaware of, including dilation of the pupil - the eye’s way of protecting itself from bright light, as well as the eye’s way of regulating its internal pressure.

Due to the lack of this function in Meg’s eyes she is extremely photophobic and also has glaucoma - the pressure in her eyes is too high and causes internal damage and weakness. This can also lead on to early cataracts - another thing Meg has had to deal with.

So far Meg has had roughly 18 operations on her eyes, including tube implants to control her pressures, cataract removal in both eyes and lens implants. Unfortunately during one of these operations her retina was detached and she permanently lost the vision in her left eye.

Losing her vision is inevitable sadly, due to the degenerative nature of her condition. Recently her right eye has developed scarring and vein growth which is starting to cover her lens. Her eye doctor has decided NOT to operate at this point as the risk of losing what image she has left is too high.

As it stands, Meg’s family are now in a holding pattern, literally just waiting for the day when her eye will just stop working, and judging by her recent check-up, it’s not going to be too much longer until that happens.

Meg is such a lovely, kind, super brave and courageous 11 year old. Let’s fulfil her biggest wish and get her to Disneyland

Any help would be beyond appreciated.