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LeonieC

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neurofibromatosis type1 and moya moya phenomena
Oct 19^th, 2010 at 6:24am

Hi everyone, my baby Leonie was diagnosed with neurofibromatosis type 1 when she was born because of the "coffee-milk spots" all over her body.
Three weeks ago when she was just one year old, she got two big strokes. She did MRI on that day and we were told Leonie got moya moya condition.
That's really breaking my heart when I saw my little one was suffering stroke and I am shocked by that such rare disease my baby got. She is my first baby.
Now she is taking medicine and we are waiting to see her doctor next week to see what the plan is.
I'm really worried and have no idea what will happen next.
Does anyone here have same experience?
Thank you
Helen in Melbourne, Australia

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LeonieC New Poster Offline I Love MM.com! Posts: 24	Re: neurofibromatosis type1 and moya moya phenomena Reply #1 - Oct 19^th, 2010 at 8:35pm no reply yet?
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Skay5709 Junior Poster Offline I Love MM.com! Posts: 60	Re: neurofibromatosis type1 and moya moya phenomena Reply #2 - Oct 19^th, 2010 at 10:25pm Helen, Am so sorry to hear about Leonie. I am sure that you will hear from other mm members soon. Some are in Australia. I know that you are scared but try to be patient and you will get your answers and advice soon. My prayers are with you and your family
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LeonieC

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Re: neurofibromatosis type1 and moya moya phenomena
Reply #3 - Oct 19^th, 2010 at 11:38pm

Skay5709 wrote on Oct 19^th, 2010 at 10:25pm:

Helen, Am so sorry to hear about Leonie. I am sure that you will hear from other mm members soon. Some are in Australia. I know that you are scared but try to be patient and you will get your answers and advice soon. My prayers are with you and your family

Thank you for your thoughts. I was told that Leonie maybe the first one in Melbourne that got neurofibromatosis type1 and moya moya phenomena Cry

They don't know exactly what Leonie will be after surgery as her condition is more complicated than others with moyamoya only. Sad

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dmm

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Re: neurofibromatosis type1 and moya moya phenomena
Reply #4 - Oct 20^th, 2010 at 8:58am

Helen
Sorry to hear about Leonie. It is a very hard time for you and your daughter. My thoughts are with you.
I live near Melbourne and my 18y.o. daughter has unilateral moyamoya.
There have been a few parents on this site recently who have had children diagnosed that live in or near Melbourne.
Is Leonie seeing doctors at The Royal Children's Hopsital?

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Audge Experienced Poster Offline Daughter Emily has MM Posts: 107 Armada, USA, usa, MI, Michigan Gender:	Re: neurofibromatosis type1 and moya moya phenomena Reply #5 - Oct 20^th, 2010 at 11:36am I sent you a private message.
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LeonieC

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Re: neurofibromatosis type1 and moya moya phenomena
Reply #6 - Oct 20^th, 2010 at 11:59pm

dmm wrote on Oct 20^th, 2010 at 8:58am:

Helen
Sorry to hear about Leonie. It is a very hard time for you and your daughter. My thoughts are with you.
I live near Melbourne and my 18y.o. daughter has unilateral moyamoya.
There have been a few parents on this site recently who have had children diagnosed that live in or near Melbourne.
Is Leonie seeing doctors at The Royal Children's Hopsital?

Leonie is seeing doctors in Monash Medical Center as we live near that hospital

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LeonieC New Poster Offline I Love MM.com! Posts: 24	Re: neurofibromatosis type1 and moya moya phenomena Reply #7 - Oct 21^st, 2010 at 12:10am Audge wrote on Oct 20^th, 2010 at 11:36am: I sent you a private message. Thank you very much for your message
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dmm New Poster Offline I Love MM.com! Posts: 36	Re: neurofibromatosis type1 and moya moya phenomena Reply #8 - Oct 21^st, 2010 at 5:59am Not sure if Mr Danks is still at Monash but a family I've had recent contact with said he operated on their son's moyamoya about 10 years ago. Said he trained under Dr Scott from Boston and he was very good. Hope everything goes well for Leonie.
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LeonieC

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Re: neurofibromatosis type1 and moya moya phenomena
Reply #9 - Oct 21^st, 2010 at 11:02pm

dmm wrote on Oct 21^st, 2010 at 5:59am:

Not sure if Mr Danks is still at Monash but a family I've had recent contact with said he operated on their son's moyamoya about 10 years ago. Said he trained under Dr Scott from Boston and he was very good.
Hope everything goes well for Leonie.

Leonie's treatment doctor is Michael Fayen,who looks young but very professional and confident. What we do now is fully trust him and his team and hopefully Leonie could get back to normal after treatment.
Thank you for your thoughts.

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