Hi

My daughter Luca was 11 months old when she had her first stroke. It affected her left side leaving her with little movement. She is one of the lucky ones who has a neurologist who recognised the signs of MMD and diagnosed it immediately.

I found this site almost immediately and have been using it ever since as my first stop for support and information; for which I am eternally grateful.

We made contact with Stanford University immediately and they agreed they would like to see my little girl.

She made a remarkable recovery and started largely using her left side again after only about 10 days. She even started crawling again.

Boy, talk about a false sense of security.

Last Thursday she was rocked by two more strokes and has been in Neo-Natal ICU since. The extent of the residual damage can't be assessed because she is full of medication:- sedatives, anti-seizure meds, cortazone, steroids, etc, etc...

It looks like her right side is affected this time.

It looks like in her case she just cannot get ill or get a temperature because this seems to put her weak vessels under pressure and triggers the strokes. Prior to both incidents she was ill with a temperature.

We have made contact with Stanford again outlining the severity of her case and they opened the door immediately, saying as soon as she can travel they will admit her. But her neurologist feels we're still a few weeks away from travelling.

We have medical insurance, but they haven't given us the go-ahead yet. We did get a mail outlining the expenses for this procedures and it's frightening when converted to South African Rands. If for some reason her medical insurance doesn't pay, are there any organisations that could help with our situation?

It's really scary staring down the unknown abyss. So many questions, so few answers.

She is semi-conscious but hasn't acknowleged us since Thursday; thats really hard. All we want is a sign from her that she's improving.

Oh, it will be her 1st Birthday on Friday, please send good thoughts.

All the best to everyone here

Mark (dad), Nicky (mom) and Matthew (brother)

I am so sorry, this disease is just so devestating.My daughter suffered several strokes which left her like an infant at 5 yrs old.The great enws is she's been doing wonderful regaining what she lost and has had no strokes since ehr surgeries.I will keep your family in my prayers.Please keep us posted.
Mary Grace

Hi hrsridermom, Mary Grace and Margaret and everyone else reading this

Thank you very much for you kind, supportive words.

Luca is doing much better as of yesterday. She seems to have come out of the semi-coma state and is actually interacting with us. Although she is still quite restless and 'cross', it is beautiful to have her acknowlege us and even laugh and smile a bit. Wow, what a huge relief. She certainly has surprised everyone, including the doctors.

Of course, when you're feeling like the world is against you, good news is very often followed by bad news. Our medical insurance is only prepared to give us the equivilent of about $7000.00 for Luca to have her procedure, which as I'm sure a lot of you know, doesn't even cover one of the initial scans on arrival at Stanford. I don't think it is possible for us to afford to go to Stanford on our own funds and we are therefor looking to other options.

LoveKeanu is another MMD survivor who had her procedure done in Japan by another extremely experienced surgeon. This looks like it could be worth looking into.

Today is going to be a difficult day for Luca. The Dr is going to do a lumbar punch on her as well as so many blood tests that we, as parents, need to be on standby in case she needs some of our blood to top her up.

It's her birthday tomorrow and she's due a break.

Regards to all

Mark