HEY MICKEY YOU'RE SO FINE,YOU'RE SO FINE YOU BLOW MY..MONEY. MAY 2019 onsite/offsite Pre Trip Report

[gjdjud]

Nothing too exciting to report. Just got myself a new camera for the holiday! Shouldn't have but a I'm one of these people that once a seed is down I can't get rid of it! I can transfer all the pictures really easily from it to my phone ot tablet and if I find using my phone just wipes out the battery.

A test photo of my boy

[gjdjud]

So we’ve just got back from Evie’s latest Great Ormond Street appointment. We brought this one forward over concerns her vision was gettting worse. Unfortunately that has been confirmed. Her left eye basically can only see some light now. Her right remains stable thankfully. It’s horrible to hear but it’s not really a surprise. We also finally after 3 years got our gene results back to confirm her condition is Stargardts which we’ve always suspected. Me and DW are both carriers of the defective gene so unfortunately combined it’s a one in four chance of our kids getting it. So Evie has it, Lily Belle so far shows no signs of it. On a positive they are hoping to do trials of tests on this particular faulty gene. IF this happens and it’s an incredibly big IF then it could possibly slow down or stop the deterioration. It would never cure. No timescales on these kind of medical tests. It could be years or not all.

I’m pleased it’s over for another year. Great Ormond Street is an amazing place but at the same time a heartbreaking place to be.

So onwards and upwards. We through a charity event are going to see Wicked in the West End tomorrow. We have a special touch tour of the props beforehand and we have second row seats so we are looking to that very much. The also happens to be a Shake Shack down the road so will be leading the family there for lunch

It’s also only 41 days to go!

[Unexpectedpenny]

I’m sorry to hear Evie’s eye has got worse. Glad you have a confirmation of her condition, at least that means you can put a name to it and find more specific information.

Ooo I love Wicked I hope you all enjoy it

[Th1nkT1nk]

Sorry news for Evie couldn’t have been better.
I hope you all enjoy Wicked it’s one of my absolute favourite shows! ✨
Your countdown is certainly moving quickly now 😄

[Itsabunthing]

So sorry to hear about Evie, and hope you all thoroughly enjoy Wicked.

See you at POFQ!

[caitlinsmummy]

Originally Posted by gjdjud

So we’ve just got back from Evie’s latest Great Ormond Street appointment. We brought this one forward over concerns her vision was gettting worse. Unfortunately that has been confirmed. Her left eye basically can only see some light now. Her right remains stable thankfully. It’s horrible to hear but it’s not really a surprise. We also finally after 3 years got our gene results back to confirm her condition is Stargardts which we’ve always suspected. Me and DW are both carriers of the defective gene so unfortunately combined it’s a one in four chance of our kids getting it. So Evie has it, Lily Belle so far shows no signs of it. On a positive they are hoping to do trials of tests on this particular faulty gene. IF this happens and it’s an incredibly big IF then it could possibly slow down or stop the deterioration. It would never cure. No timescales on these kind of medical tests. It could be years or not all.

I’m pleased it’s over for another year. Great Ormond Street is an amazing place but at the same time a heartbreaking place to be.

So onwards and upwards. We through a charity event are going to see Wicked in the West End tomorrow. We have a special touch tour of the props beforehand and we have second row seats so we are looking to that very much. The also happens to be a Shake Shack down the road so will be leading the family there for lunch

It’s also only 41 days to go!

See more...

Sorry to hear about Evies eye, sometimes it gives a little relief knowing what the condition is and giving a name to it.

I hope you all have an amazing time at Wicked tomorrow, I love it! Seen it 3 times in London and once on tour in the UK xx

[Bootrip2]

so sorry to hear about Evie. you sound an amazingly brave and close family. it is so difficult comng to terms with such a life changing condition. DD has a genetic condition too, 50:50 that she would have it and she got the wrong side!DD condition does affect eyes/optic nerves, she has a tumour on optic nerve , but hers is on the outside of nerve so shouldnt affect her vision. i remember the fear of thinking she will go blind, and wanting her to experience and "see" as much as she can for as long as she can.

it sounds as though you have an amazing trip planned, do you want someone to help carry those extra bags! ? !

[gjdjud]

Originally Posted by Unexpectedpenny

I’m sorry to hear Evie’s eye has got worse. Glad you have a confirmation of her condition, at least that means you can put a name to it and find more specific information.

Ooo I love Wicked I hope you all enjoy it

See more...

Originally Posted by Th1nkT1nk

Sorry news for Evie couldn’t have been better.
I hope you all enjoy Wicked it’s one of my absolute favourite shows! ✨
Your countdown is certainly moving quickly now 😄

See more...

Originally Posted by Itsabunthing

So sorry to hear about Evie, and hope you all thoroughly enjoy Wicked.

See you at POFQ!

See more...

Originally Posted by caitlinsmummy

Sorry to hear about Evies eye, sometimes it gives a little relief knowing what the condition is and giving a name to it.

I hope you all have an amazing time at Wicked tomorrow, I love it! Seen it 3 times in London and once on tour in the UK xx

See more...

Originally Posted by Bootrip2

so sorry to hear about Evie. you sound an amazingly brave and close family. it is so difficult comng to terms with such a life changing condition. DD has a genetic condition too, 50:50 that she would have it and she got the wrong side!DD condition does affect eyes/optic nerves, she has a tumour on optic nerve , but hers is on the outside of nerve so shouldnt affect her vision. i remember the fear of thinking she will go blind, and wanting her to experience and "see" as much as she can for as long as she can.

it sounds as though you have an amazing trip planned, do you want someone to help carry those extra bags! ? !

See more...

Thank you for all your kind replies.

We had a lovely day. We had a workshop first which I’m not going to lie was mine and Evie’s idea of hell! We had to stand in a circle, interact kind of thing. Me and Evie are both shy and really don’t like that kind of thing! Kelly and Lily loved it! We then had the touch tour which was really good. It was all on the stage.

We all really enjoyed the show afterwards and we’ve had a really good day.

[MrsSilverStar]

Looks like a great day, even with the dreaded forced interaction! That green baby is a tad creepy too!

Really to sorry to read about Evie’s sight getting worse x

[GezzasGem]

Sorry to hear the news - you all cope so well with everything, Evie such a trooper! Can't believe how grown up the girls are now, remember reading your earlier trip reports! Glad you had such a great time at Wicked 👌