The Adolescent

Dani

Hola Kristiina,

Dani looks like a young man. The child we knew is starting to fade away, turning into an adolescent.

Please find Tesfaye’s recount on his last events:

“Dear Roberto; how are you these days?

Dani is doing good and I have passed all your meseges about his
learning, practice and that you are thinking a lot about him as well.
He was very happy and he was saying “eshi, eshi…”that is to say Ok,Ok….

In the last week, Zelalem and I took him out for Dinner out side Sele Enat compound,
it was a good experience for Dani; he was giving his charming face and hand for
greeting to every body passing beside him.

Dani was busy the past weeks beside his class and practice, we also took him for shopping as well to buy for him jackets, tshirts, underwears,
trousers and what he needs especially for this rainy time and he was very happy.

Oona has also come to visit Dani as well.

Dear Roberto;Thank you very much for everything.

Best Regards.”

“Dear Roberto;How are you doing?
Dani is doing fine, he has no epileptic attack even after his last appointment.
he is showing good progression with standing and walking.
And he is still attending his classes,they will close the school
for summer after two weeks.
Thank you very much for everything.
Best Regards,
Tesfaye”

Growth

Hola Kristiina,

Last developments in Dani´s life are positive. While he practices daily, the incidences on his health are diminishing. At the same time, he is growing. Soon, he will be a grown up. In the meanwhile, Tesfaye is taking good care on his routine, encouraging him to continue practicing.

Let me show you a few graphic evidences.

 

Happy Day!

Hola Kristiina,

We are happy to celebrate your birthday today. In different places but similar events took us to wonderful times. We cheer those moments and remind them warmly. Happy birthday Kristiina!

 

Dani is doing good, but his little friend Dani has departed to a different continent. Little Dani will be happy there, and so it is with Dani, although he might not understand it yet.

 

Everything else is good. Dani keeps practicing and visiting doctors regualarly. Soon he will “need knee ankle foot orthosis (KAFO) to support and stabilize the left leg, which is recommended and will be helpful for his symmetry and weight bearing.” We will be happy to support with it.

 

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Endet Neh

Hola Kristiina,

Last weeks have been information prolific and Dani visited Dr. Zenebe. Doctor has concluded that for some time a surgical intervention should not be beneficial, and that is what you can read underneath from Tesfaye´s lines:

December 18th:

Dear Roberto,
I have addressed your thought and everything what you said to Dani, he is happy as always and he was acting like dialing phone to you by saying Roberto,Robeto….”endet neh” means like how are you Roberto“.

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December 22nd:

Dani is getting better with  his urinary problems, and he is even in good mood after the adjustment of his epilepsy drug (phenobarbital).
As you said Dr Zenebe’s plan of treatment is caring and seems well planned,after we have made multiple Doctors visit,Dr Zenebe give as a better clinical judgement and opinion so what we have here is that to follow his plan of treatment,as I explained for you,Dani will have the appointment in January 31,2014 as part of his continuous follow-up,to see whether there is need for shunting or not,and other symptoms“.

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January 21st:

Dani is doing good and happy as always,He is keeping on his daily physiotherapy treatment“.

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February 4th:

Zelalem and I have taken Dani to Dr Zenebe for his appointment of two month on Monday February 2,2015.
 we  have explained to Dr Zenebe that Dani was showing some sort of  withdrawal symptoms after phenobarbital is gradually reduced and finally   stopped to give for him,The Dr. decide to replace for him combination of carpamine and phenytoin instead of phenobarbital and phenytoin.
We have asked him about shunting possibility as well,he has explained,Dani has no good sign for shunting at the moment and  as that will be good to check him in follow up.And He has given one month appointment for march 02,2015 to see how he is doing with the drug combination and if there is any new symptoms as well“.

February 8th:

Dani is fine and he is better with the new drug combinations and although it seems he need long period of rehabilitation time since other treatment(surgical innervation) is not done for him by this moment due to his conditions and Dr’s opinion.
Yesterday while i went to treat him,there was ceremony with children in the compound by two Ethiopian family and he was very happy I have attached some pictures while he was attending the ceremony“.

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THANK YOU

Hola Kristiina,

Some weeks ago I did update the bank account post with the following message:

We are grateful for the support received and will be implementing our project for the next few years.

For the moment we kindly ask to halt donations as the project is sufficiently funded. We will, therefore, concentrate in the implementation phase.

Dani´s health is our utmost desire and focus.

Despite of it, we keep receiving donations from friends and colleagues who want to drop their contribution. It will be certainly added to the project and we are grateful for it. However, we encourage donors with warmth and respect to kindly discontinue deposits.

Now Kristiina, I leave you with Dani´s basketball skills.

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July 6th, 2014

Hola Kristiina,

Today is a special day for all of us and while we think about you I would like to express the positive moments we are experiencing:

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Dani is calling me?

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Go Dani, go!

 

 

 

 

 

Dani is doing good. His remarkable good mood has not varied since the last time we talked. He has recently gone through a series of epilepsy attacks that were heftier than normal, but he has been treated and the last two weeks became stable. His seventeen hours of extra physiotherapy with Tesfaye on June have been assessed as responsive and overall positive. This has led to explore the possibility to provide orthopaedic aid, to which we will commit.

The North has been extraordinary. Manamansalo was not only the peaceful retreat you described, but a delight for the senses where life turned around nature, coexistence, sauna, and the lake, a revitalizing presence that was challenging to bring to an end. Karhunkierros presented me a natural diversity on the go that left me speechless in uncountable moments. Northern Ostrobothnia displayed landscapes, people, and animals that were beautiful, hospitable, and gracious.

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Kitkajoki river at Karhunkierros trail

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Manamansalo

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Nilla, the gorgeous Lapponian Herder

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Around Merenoja, in Karhunkierros trail

 

 

 

 

 

 

 

 

 

 

Finally, Pupunen, we are celebrating your birthday today and will blow the candle on the cake, imagining that Aleksandra and yourself are likewise doing it.

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Happy birthday, Kristiina

Happy birthday!

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Happy birthday!

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