Hello

[Bryony]

Thank you all for again for your kind welcome, here is a picture of my daughter, the only thing that keeps me going and got me out riding View attachment 31523

A beautiful photo of a beautiful little girl. So sorry for your loss.

 

[Jack Edwards]

Im sorry for your loss. My daughter has also got a heart condition, currently under the Royal Brompton hospital, London.
She Keeps me going too.

 

[Jason.T]

Im sorry for your loss. My daughter has also got a heart condition, currently under the Royal Brompton hospital, London.
She Keeps me going too.

Hope everything will be ok with your daughter mate I really do, think positive and be there for her do you mind me asking what condition she has?

 

[Jack Edwards]

Hope everything will be ok with your daughter mate I really do, think positive and be there for her do you mind me asking what condition she has?[/quote




Low QT syndrome is what the hospital referred to it. She has to have an ECG every 3-4 months to monitor the growth of the heart and the condition. We have been told to keep an eye on her when running around in case she faints or goes a little blue, but takes it in her stride and DOES NOT STOP.
Her nan has a pace maker implant. When her heart rate is raised it cant handle the extra beats and begins to quiver. My daughter is on medication before bed every night, but bless her she takes her medication soooo well, like its nothing and normal. Gets me choked everytime.

 

[Jason.T]

I'm glad she's doing well and the hospital is keeping an eye on her

My daughter had TAVPD, basically the arteries going to her heart were in the wrong place, we had no idea and she showed no symptoms whatsoever not even in any post natal check ups, the hardest thing was that she seemed perfectly well in the morning and was feeding when I left for work, she was asleep in the afternoon and her heart just stopped and she died in her sleep, that was the biggest shock to try to come to terms with, the condition she had was very rare only 1 I ten million are diagnosed with it

 

[ScotiaLass]

I'm glad she's doing well and the hospital is keeping an eye on her

My daughter had TAVPD, basically the arteries going to her heart were in the wrong place, we had no idea and she showed no symptoms whatsoever not even in any post natal check ups, the hardest thing was that she seemed perfectly well in the morning and was feeding when I left for work, she was asleep in the afternoon and her heart just stopped and she died in her sleep, that was the biggest shock to try to come to terms with, the condition she had was very rare only 1 I ten million are diagnosed with it

Oh that must have been so difficult for you all
My little grandson had a heart op at Great Ormond Street when he was 7 months old.

 

[Jason.T]

Oh that must have been so difficult for you all
My little grandson had a heart op at Great Ormond Street when he was 7 months old.

It was very hard but to add to things we had to have a interview with the police an hour after she died because it was a sudden death, they even took her pushchair away to examine it, the worst part of all is the fact that even though it was so rare there is a simple operation to fix it and if it was picked up she would still be alive today

 

[Jack Edwards]

Im speechless, that is a very rare condition. Sounds like you keep head up high.

Im looking to do the london to newcastle 2014in 24hrs for the the Royal Brompton charity.

 

[ScotiaLass]

It was very hard but to add to things we had to have a interview with the police an hour after she died because it was a sudden death, they even took her pushchair away to examine it, the worst part of all is the fact that even though it was so rare there is a simple operation to fix it and if it was picked up she would still be alive today

I understand - haven't been there myself but I know it's procedure in a sudden death situation
I hope you are both gradually healing

 

[Jason.T]

Im speechless, that is a very rare condition. Sounds like you keep head up high.

Im looking to do the london to newcastle 2014in 24hrs for the the Royal Brompton charity.

That's great, to be honest I never done any charity work until this happened, with the guys that done the ride toMiddlesborough and back a friend who done the swansea 10k and the Cardiff half marathon and our own Facebook page we have raised about £8500 split between the Noah's ark appeal and the lullaby trust

 

[Jack Edwards]

Thats great, keep up the good work.

Do you have the link, ive love to donate on payday as its so close to me personally.

 

[Jason.T]

Thats great, keep up the good work.

Do you have the link, ive love to donate on payday as its so close to me personally.

Of course mate that's fantastic can't thank you enough

In the link there are 4 separate raising appeals the first 3 are the riders and the bottom one with her picture is the original one we set up, it's a shame that it doesn't show the full amount raised as my friend who done the running has his own page and the riders had a lot in cash donations,

Here is the link

http://www.justgiving.com/remember/59784/Lexi Mia-Thomas

 

[Jack Edwards]

Cheers bud,

I get paid on the 31st, ill donate themln mate.

 

[Jason.T]

Thank you mate much apriciated

 

[FFJ]

my sympathies, really sad