Dear moyamoya family,

we are the parents of a 3 years old baby girl who is diagnosed with moyamoya disease. We come from Poland where the incidence of moyamoya is extremley rare. Our daughter Hanna experienced two ischemic apoplectic strokes within a period of a month (on 12/2008). When we lost hope for operation in Poland due to the fact that doctor refused to help us we had an appointment with prof. Trojanowski (from Poland) and the surgery was conducted on 05/05/2009. We could not belive that after so many months of fighting for our daughter's life, the surgery would be finally performed in Poland. As of today, 7 months after Hania's surgery, our daughter feels much better but unfortunately Hania still suffers from very strong body spastic. She doesn't speak or move. She can't sleep at night (shy cries a lot). We know the consequences of two strokes can be sever for her, but we hope that youn children come back to their shape very fast. We do everything to help her become independent. We are wondering if you could help us and give us some professional advice and assessment of Hanna's rehabilitations that is taking place here in Poland. Perhaps you could give us some pointers how we should rehabilitate Hanna and what cures you gave your children? We would be grateful for your help in this case 

Hanna's parents

Thank you for your note. I’m sorry for my English but I don’t speak English well  We are so glad that your daughter is doing great! Hanna experienced two ischemic apoplectic strokes within a period of a month. Hanna had suffered a large infarction of the left side in the arterior middle cerebral artery territory as well as the smaller one on the right side. She subsequently suffered a second stroke involving the right hemisphere. Her brain has been damaged on considerable area. Till today Hanna has all  limbs paresis, doesn’t speak or move. Hanna is rehabilitated every day  (about a one hour a day) and we often goes to professional rehabilitation center (we been there 3 times and we spent there about 3 weeks each time), we also spend much time in the swimming pool – Hanna loves water  As for the medications, Hanna takes mydocalm (latin name: Tolperisoni hydrochloridum) luminal (Phenobarbitalum ) aspirin, neurontin ( Gabapentinum) -this one temporarily. Hanna still very suffers from very strong body spastic. She can’t sit down by herself, raise her head or catch things in her hands. Our large problem that we should solve is the difficulty in Hanna’s sleeping. Nights are sleepless. Hanna can’t sleep, she often waking up and he isn’t sleeping all hours. Did you have similar problem with your daughter? What was your daughter's health after the strokes? How was your daughter rehabilitated? What kind of medications  did she take? We will be grateful for the information . This is very important for us. Hanna’s physiotherapists say that Hanna has the large potential and she making progress but unfortunately the effects are still not enough for us and Hanna suffers a lot.

Eve

Eve, I hope you got my e-mail....How's Hannah doing?
Mary Grace

Hannah unfortunately has broken her femur bone during the rehabilitation today. We have no idea how this could happened. Hannah will be operated this evening.  Keep your fingers crossed for our girl.

Thinking of you and little Hannah today. All the best.

I am so sorry! Many prayers for Hannah and her surgerys.

Sorry I haven't been in touch but we are still in hospital and there were some complications after operations (we were afraid that would be necessary a blood transfusion because Hannah's blood results were very bad but we managed without transfusion) but it is ok now. Thanks all for your responses and prayers. It helps so much to hear from you. Hannah's surgery went well. . Hania is still in the hospital and she is very restless.Hannnah's bones are very brittle (breakable) and therefore Hannah broke the femur during the rehabilitations. If Hannah's bones were so strong like healthy children have, her femur wouldn't be broken. Her rehabilitation will be proceeding differently after we leave the hospital because we can't expose Hannah to the risk. of breaking another bone. She will have to take medicines to strengthen her  bones. We worry about Hannah. She is in a lot of pain.  Everything is so  complicated.

Eve

I have bad news. We just have learnt that Hannah must have the second surgery.She just has X-ray and it turned out that there were serious complications.The oparation will be tomorrow. We worry very much

Many prayers for your family. I'm so sorry that Hannah has had such a difficult time. It's so hard to watch our children go into surgery, please know that our prayers will be with her. Keep us posted when you can...
Mary Grace

Will be adding Hannah to our prayers tonight as well !!

I'm so relieved and happy to hear that.Thank you for the update. I will keep her in my prayers that she continues to heal. You must be so happy to be at home with her!
Mary Grace

Good news. Hannah is in the thoughts of all of us.

Paula

I hope Hannah's progress is continuing. What a little trooper she must be. Just letting you know she is in my thoughts and prayers.....
Mary Grace