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come on uk residents !!! (Read 12241 times)
Jane...Chloes Mummy
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Keep smiling

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westyorkshire, England, europe, 177, 210
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come on uk residents !!!
Jan 18th, 2006 at 6:41am
 
Come on guys lets get a meeting sorted in the uk.
It will be great to meet up.
Jane
Chloes Mummy x
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louise_and_Lydia
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my daughter Lydia is 1
and diagnosed with MM
2002

Posts: 33
Swansea, United_Kingdom, europe, 150, 229
Gender: female
Re: come on uk residents !!!
Reply #1 - Jan 18th, 2006 at 7:02am
 
Hello, SmileyMy Mum is helping me type this today. I am off school with a tummy bug. She always sends messages  but I wanted to say something. So I am telling my Mum what to type. I would love to meet other little girls like me( I am just 10 in December) I dont like getting dizzy spells but I get thro it and Im ok most of the time. I went to Great Ormond Street Hospital last month and I think they want to give me an operation  Sadbut I now dont mind as I will get lots of presents ;Grin...so come on Mum, try and sort out a get to gether so we can have a party!!!!!!!!!!!!yeah

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love and hugs Louise & Lydia
 
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Jane...Chloes Mummy
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Re: come on uk residents !!!
Reply #2 - Jan 30th, 2006 at 5:56pm
 
Cheesy
Hello Lydia
Nice to hear from you, im sure Chloe my daughter, she is 8 next month would love to meet you. Hope your tummy bug is better ???
Jane  Chloes Mummy xxx
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AviAmb
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Re: come on uk residents !!!
Reply #3 - Jan 31st, 2006 at 2:18pm
 
EmbarrassedHello,

My name is Amber and I am just about to be three. I have just been diagnosed with Moyamoya. I had a stroke before Christmas but i am getting better.  Mummy is very very worried as I have to have an op on the right side of my head. She wants to know if Leeds general has a good reputation especially a Dr Tyagi????

very scared mummy!!!!
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louise_and_Lydia
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my daughter Lydia is 1
and diagnosed with MM
2002

Posts: 33
Swansea, United_Kingdom, europe, 150, 229
Gender: female
Re: come on uk residents !!!
Reply #4 - Jan 31st, 2006 at 7:12pm
 
Hi Amber,(and Mummy)

My little girl lydia had a stroke 3 years ago but you would never know, she does just fine. Till your mum that she could always contact Great Ormond St childrens hospital where Dr Ganesan a moyamoya expert is based for advice and info about having the operation in Leeds.

Lydia too will be having the operation soon in London, but they are very confident it will be succesful.

After the operation you will feel much better.

Hopefully soon we will organise a gathering and then all the little moyamoya children can meet up and have some fun Smiley
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love and hugs Louise & Lydia
 
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purplekaren
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My daughter Libby has
MM

Posts: 1
High Wycombe, United_Kingdom
Gender: female
Re: come on uk residents !!!
Reply #5 - Mar 1st, 2006 at 4:33pm
 
Hi Jane & Chloe, Louise & Lydia, Amber & mummy

I'm Karen, Libby's mum.  She is 5 1/2 and has had 10 or so TIAs (3 in the last 3 weeks strangely).  We have just met with Dr Ganesan at Great Ormond Street hospital for the 2nd time and are now waiting on an appointment for Libby to have an Angiogram and another MRI.  They have said she is a good candidate for surgery and as with Lydia are positive about good result.

We are all worried, of course, but confident in the medical team at the hospital.  Libby is OK about it and understands bits and pieces (I think).  She's most excitied about the prospect of a couple of nights in the 'patient hotel' at Great Ormond Street!  Can't think of anywhere I'd less like to be myself!!!

Thinking of you all.  Smiley

Karen
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louise_and_Lydia
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my daughter Lydia is 1
and diagnosed with MM
2002

Posts: 33
Swansea, United_Kingdom, europe, 150, 229
Gender: female
Re: come on uk residents !!!
Reply #6 - Mar 2nd, 2006 at 6:48pm
 
Hi karen and all,

Lydia and i are in GOSH Monday 6th...Lydia will have MRI Tuesday (this is her 6th one so far!) and angio Wedensday, she will have a general anasthetic for angio...so will let you all know how it goes...we will be in the same boat as Libby, where a decision will have to then be made about surgery, so wish us luck

Bye for now Smiley
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love and hugs Louise & Lydia
 
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Jane...Chloes Mummy
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Re: come on uk residents !!!
Reply #7 - Mar 6th, 2006 at 12:50pm
 
Hi
Guess you will be at GHSO now, just wanted to wish you look, let me know how things go, when you have the chance.
My thoughts are with you, and god i know how you will be feeling.  All our love and hugs to Lydia, and you of course !!!  Jane (Chloes mummy) Chloe and Thomas, little brother aged 3 xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

P.s looking forward to meeting you soon xxxxxxx
Smiley
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Jane...Chloes Mummy
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Re: come on uk residents !!!
Reply #8 - Mar 6th, 2006 at 12:55pm
 
Hello Everyone
Hope all is well.
Chloe is well at the moment apart from tummy bugs and colds.
Her right leg is quite bad at the moment and at our last appt at Leeds hospital they decided to put her a plaster cast on again, hope it works to straighten her foot out, as she was walking on tip toes.
Chloe had a birthday last week she was 8.  She had a party and although she was in the cast, she was the dancing queen !!!
Hope to hear how you guys are doing soon.
Jane Chloes Mummy. xxxxxxx
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AviAmb
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Re: come on uk residents !!!
Reply #9 - Mar 31st, 2006 at 6:04pm
 
Chloe, Lydia, Libby and Mummies.

Hi everyone. Mummy took your advice and went to GOSH. Leeds only wanted to do the right side as left was so damaged. Dr Ganason and Mr Thomson are going to do both side. Seem lovely. First op on 10th April. Second four to 6 weeks later. Mummy is scared but more scared of loosing me to MM. Mummy left some info on the general message board. Very near Jane. Go to Bradford regularly(Nr Selby).  How is everyone? Love to you all Amber and Mummy(Avril)xx Smiley
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Jane...Chloes Mummy
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Fao Amber and Mummy.
Reply #10 - Apr 6th, 2006 at 11:57am
 
Hello Amber and Mummy (Is it Avril ) ???
Hope everythings okay.
Guess you will be getting ready for surgery on Monday, my thoughts are with you guys okay...
As soon as you are home from hospital and fully recovered we will arrange to meet, as we are only in Bradford.
Take care all our Love Jane,Chloe and Thomas.
P.s Cnat wait to meet you Amber. Smiley
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Jane...Chloes Mummy
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Avril
Reply #11 - Apr 6th, 2006 at 12:02pm
 
Hello again
Just wanted to say, my thoughts are with you Avril. Chloe was about the same age when she had her surgery, she was 2 and 1/2, she had one side done then the other 6 mths later.  The prospect of brain surgery is very frightening but i was surprised how strong and determined Chloe was and im sure Amber will be too. 
I will be thinking about you Monday, look after yourself
Jane xxx 
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louise_and_Lydia
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my daughter Lydia is 1
and diagnosed with MM
2002

Posts: 33
Swansea, United_Kingdom, europe, 150, 229
Gender: female
Re: come on uk residents !!!
Reply #12 - Apr 6th, 2006 at 6:18pm
 
Hi Uk Gang,

sorry so long in posting,not been on site,moving home so distracted. We stayed at gosh patient hospital( very nice) for Lydia tests. Just had letter , Dr thompson def wants Lydia to have surgery. We have been given a date of 8th May, but guess what?thats the week of my house move,nightmare!!!so I am in touch with Claire,the liason nurse to see if the date can be put back a little.

Good luck to Amber for Monday, will she be on parrot ward? arn't our little gilrs so brave. We must def meet up after this.

Louise  Smiley
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love and hugs Louise & Lydia
 
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Jane...Chloes Mummy
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Fao Avril
Reply #13 - Apr 13th, 2006 at 10:56am
 
Hello How have things gone???
Been thinking of you
Jane xxx
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Re: come on uk residents !!!
Reply #14 - May 2nd, 2006 at 5:12pm
 
Hi Jane,

Did you not get my messages??? Ambers Mummy
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louise_and_Lydia
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my daughter Lydia is 1
and diagnosed with MM
2002

Posts: 33
Swansea, United_Kingdom, europe, 150, 229
Gender: female
Re: come on uk residents !!!
Reply #15 - May 24th, 2006 at 7:24am
 
Hi folks,

Have posted on general site but thought I would pop a post onto this UK thread.... I feel guilty that I post so little, I was finding that I was getting obsessed with reading posts on the site daily and getting over absorbed with MM, which I feel is not always healthiest way to do things as need to keep up balended on keeping  todate........Hope all went well with Amber operation.  Lydia is going to have her operation 10th July, so will be staying up in London for that week. will post site to let you know how we get on.... Smiley
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love and hugs Louise & Lydia
 
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AviAmb
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Re: come on uk residents !!!
Reply #16 - May 24th, 2006 at 2:20pm
 
Hi Loise and Lydia,

Sorry did not get your messages not sure why but I did post a reply to you about meeting up but its not there so here hoping this works. Ambers op went great, infact she was up trying to climb out of the cot hours after. No bad after affects. she did have a massive stroke before Christmas and although her leg is coming back there is only a little change in her arm? She is off to GOSH tomorrow for the left side. If all well I guess its abit  of await to see how well its worked. Sorry this all sounds a little down just a little scared I think. All were lovely at GOSH although one of the receptionists at the GOSH hotel was a bit of a bear with a sore head! Will let you know how op number two goes

Love Avril and Amber
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Re: come on uk residents !!!
Reply #17 - May 24th, 2006 at 3:22pm
 
Smiley

Hi All!

Only just found this site can't believe it was here along!

My son, Liam, (one of twins) is 6 and was diagnosed with MM in July 2005. He had his first ICEC surgery at Great Ormond street in Jan this year and then the second side done is March. He has coped really well, found the first few days hard then bounced back!

Dr Ganesan and especially Liam surgeon Dr Thomson were amazing, going back to see them on 8th June.

Would really love to meet up with anyone with children with MM. It would be great to exchange experiences.

Lucy - Liams mum! x
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« Last Edit: May 24th, 2006 at 3:24pm by gary »  
 
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AviAmb
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Re: come on uk residents !!!
Reply #18 - May 24th, 2006 at 5:35pm
 
Hi Louise,

Sorry about spelling. Hope all goes well on 10th July!  Hi Liamís Mum. I though Dr Thompson was amazing too and Clair Toolis, his nurse, has been so lovely.

Love Avril and Amber
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louise_and_Lydia
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my daughter Lydia is 1
and diagnosed with MM
2002

Posts: 33
Swansea, United_Kingdom, europe, 150, 229
Gender: female
Re: come on uk residents !!!
Reply #19 - May 25th, 2006 at 7:08am
 
Hi Avril and Gary and  Jane and all our little ones.

Its so reassuring to know that there is a group of MM ers in UK especially parents of MM. We are all going thro the same thing and its so nice to know that despite it being a rare disease, a site like this brings us all together so that we can be up todate at all times and share experiences and advise.

I too have found GOSH great,they are so familiar with MM you feel like you are in safe hands. Dr Ganesan and Claire are great,especially Clair, she answers all my questions promptly and sorts out my accom in patient hotel, she bends over backwards.

Our last stay at GOSH was ok, staff on whole were great all though you do get the occasional grumpy Staff like you said Avril!!!!

I just assume they are having a stressfull day and I try to soften them up to get them to smile!!!

Anyway, must dash, can you believe I am moving to new house this week, then going on Holiday,then coming back to intense training course in work and then off for op, so my head is spinning.!!!!!!!Smiley
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love and hugs Louise & Lydia
 
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Re: come on uk residents !!!
Reply #20 - Jun 7th, 2006 at 6:19pm
 
Hello everyone,

Musy stop doing this late at night as my spelling gets worse than normal.
Amber sailed through the operation at GOSH. I too think when someones gumpy there might be something behind it-usually start making up my own story line, usually more unbelievable than Dallas!!!!. Try to be understanding but not always possible as own stress levels are too high (before op) and really low after-when she is OK. Everyone was lovely.  How do you get out of thinking about it all the time, do you ever know its all ok?

Avril
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Jane...Chloes Mummy
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Re: come on uk residents !!!
Reply #21 - Oct 24th, 2006 at 8:13am
 
Hello Avril
Did you send messages directly to my email addy ???
I havnt had a pc for a while but i have had chance to just check my email site at my sisters and didnt get anything from you ???
Jane xxx
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doca79
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my son sam has moyamoya
and down syndrome

Posts: 4
newcastle ypon tyne, United_Kingdom, europe
Gender: female
Re: come on uk residents !!!
Reply #22 - Jan 4th, 2008 at 5:00am
 
Hello everyone,
                      We live in newcastle upon tyne, my son Sam was diagnosed feb 06 after 2 strokes and had surgery on left side jun 06. He needs further surgery on right side but unsure when. Sam has downs syndrome and has had bowl and heart surgery in his first year he is now 5, 6 in april. Really upset when we found out about moyamoya little man has been through enough all ready. Sam and his siter Shannon are our life, they are so full of cheeky smiles!! Nice to hear others stories, hope all are well.

Nicky xx ;Grin
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nicky & family xx
 
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kirsty
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Re: come on uk residents !!!
Reply #23 - Jan 4th, 2008 at 12:14pm
 
Hi everyone
                 I live in Fleetwood, Lancashire and was diagnosed with mm at the age of 14.I had surgery at Walton Centre, Liverpool by Paul May and have been ok since. I'm now 21 and have a 3 year old son. I recently had a check up and have water and a collection of white blood cells around my scar on the left hand side. Not heard anything else since from the consultant.
I would like to hear from anyone to share symptons and experiences s I dont know what the furture holds for myself and my son.
Kirsty xx
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marie0606
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Re: come on uk residents !!!
Reply #24 - Sep 21st, 2008 at 7:20am
 
Hi Guys
Could some-one please give me some info. My daughter Marie(17) has recently suffered 2 strokes we have now been told Marie has Moyamoya. Marie also has Down Syndrome. At present we are awaiting appoitment 2 see Neurosurgeon. We life in Scotland so would love 2 hear from any-one who could advise us many thanks.

                                    Michelle (mum)
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