Rainy Addis

Hola Kristiina,
Rainy season is once again hitting Addis, and Dani is making the best out of it with Tesfaye`s valuable help. He is cheerful, as usual, and eager to keep practicing, despite of the inconveniences.
Here, please find a few recalls from Tesfaye:
August 8th,
Dani is doing good and i have passed your big hug and plenty of kisses;

he is very happy as always he does.

Dani is showing a very good improvement in his gait (walking) activity
with the support of left KAFO (knee ankle foot orthosis) and with right
side axillary crutch. he is know walking slowly about 30 meters;it is like

walking distance from his bed room to physiotherapy room.

Hope fully this will improve his endurance,strength, cardiovascular
and his over all functional activity even better.
July 30th,

I have passed your plenty of kisses for Dani;he has responded with happy smile as always.

I have taken him for his appointment to Dr.Zenebe on July 14, after we explained Dani has
good general conditions, no epileptic attack for almost nine to ten months and he is  on school brake
as well ,then The Dr.the decided to decrease the dose of carpamazapine to 50mg morning
and night;that was 50mg morning and 100mg night and to continue with the same dose of phentoin.
Dani is doing good with the new dose still he doesn’t show any withdrawal symptoms;he is doing very good.
And Dr.Zenebe give us next appointment for October 14 after three months to see any symptoms.
July 4th,
Although this days the weather of Addis is  Rain,chilly and cloudy;

Dani is able to manage it very well.He is doing good with his general appearance and regular physiotherapy.

We have received Dani’s school certificate from mekinisa school,
That his card shows in two pages written in Amharic , subjects he has been taking(Food training,physical exercise,communication,matching and training,self care,toilet training,and painting) and improvement he has scored.
Dan’s Teachers state on his card that he has  good improvement on
concentration,understanding, remembering, and fallowing orders, after comparing his activity through out the year.This is one big step for Dani,exposing him to different environment and situations helps a lot to improve his memory and motor learning.
This will  be a good indication to see even better challenges and more exposure to different new environments in the future.
Dani”s Continues follow up with Dr.Zenebe in chrismass hospital after two months will be in July,14;We will take him and discuss again about his medications.

With a Little Help of Our Friends

Hola Kristiina,

It is a beautiful sunny day in here, and I am confident you have sent this wonder to us. Dani had a great drive on Friday, when he visited the Korean Hospital. He was cheerful and excited, as I thought it was going to be. He laughed and shared his “shark-charm” to his car mates and people in the hospital.

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Shark-charm

However, and that kept us kind of baffled, there was not much information we could get from Dani’s visit to Dr. Marsha. Apparently the doctor needed background information regarding Dani’s mother pregnancy and his early life. Unfortunately, it is unlikely to obtain this information as Dani arrived to Sele Enat Mahiber from another orphanage and there are no records available.

We have been brainstorming during the weekend and came up with different curative ideas. We could provide for physiotherapy, for diction therapy, for orthopaedic support, and even for education, as Dani has not attended yet school. But none of us is a health professional and do not know well if it is going to help to a high degree. Nevertheless, we think it is not going to harm, as I have personally experienced his physical progress during my time with him, so we agreed to start helping Dani with physiotherapy and a consultation by an occupational therapist.

Therefore, Kristiina, we will keep looking for a doctor who could treat Dani and reportedly agree on what his medical problem is.

Regarding Dr. Kiplesund, the neurologist you managed to find with your tireless networking, I have to say that I did not get any reply to my emails. But I am confident he did not learn about them, probably due to some technical problems or electronic address misspell. But I am confident as well that publishing this lines will, somehow, reach him. We are hopeful in this, and we are grateful for any support from people who could help finding a doctor for Dani.

Kristiina, do not think we got disappointed by the last event. As your mom says, we knew it was not only provide and raise money, but a common and dedicated effort towards Dani’s health improvement, and that will take time. We feel strong, and every step backward will only be to get impulse.

And now, Pupunen, enjoy with us Dani’s sunniness, the one that draws smiles from every person that crosses his path.

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Dani waits for the Doctor

Help is here!

Hola Kristiina,

As remarked previously, “help is on the way,” yes! Nathalie and her husband have found a doctor willing to take Dani for medical consultation. Dr. Marsha has kindly agreed to see him. That will be on Friday, March 28, in the Korean Hospital. Hanna will go along with Dani and Nathalie, and we are all hopeful.

I have been lately thinking about Dani, and our long walks from the Special Needs rooms at the orphanage to the Babies pavilion. I remember the many times Dani greeted and cheered other kids and staff during our walks, screaming of happiness, sometimes, and laughing and singing others. I can only imagine how blissful he will feel once he learns that he is going out on Friday, for a drive with Hanna and Nathalie. I would love to see his face.

Kristiina, there are still people supporting in different ways to Dani’s cure. Many of them relatives, friends, and colleagues, but some are just people touched by the intention of this assistance. They express the joy they feel while learning about Dani, and they engage emotionally in the aid. Some have told me their stories about their sick kids, and have asked me whether their disease is Dandy-Walker syndrome. To which, I can only explain what I learned. Some others have asked what else can they do to support, in addition to the financial contribution. I cannot really say much if they are not physically in Addis, but I suggested them to spread awareness about Dandy-Walker syndrome, and perhaps share this story, the story of the many of us engaged in curing Dani.

Pupunen, I will leave you for now, because I know there are many important people there who want to meet you, and I will keep you posted about Dani’s prognosis on Friday.

Help is here!

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Super Dani