School Year End

Hola Kristiina,

Dani has now finished his course and is ready to receive the yearly certificate of completion. This is rewarding for him, as well as for all of us.

Please see Tesfaye´s last news on his progress:

June 17th,

“… though this time is rainy in Addis, Dani is practicing his exercises regularly and his epilepsy is stable and controlled. The school is closed now and Dani will spend all the day in the orphanage for the next three months.  He might need something to stimulate him
during these days so I will try my best to make him active.”
June 8th,
“Dani is doing fine and there are no withdrawal symptoms that challenge him. He is doing his  best to achieve his functional activities, and participation  as always.
This time the school year is going end and Dani will spend the next three months in the orphanage with the children. It might be longer for him since he has adapted to go to school.”
May 10th,
“On Tuesday I have spent with Dani in the christmas hospital for his medical appointment. Dr Zenebe has asked and assessed how Dani was doing in the past  four months, then I have explained him that he was showing withdrwal symptoms for short durations, for two minutes in the begginning of January, after the reduction of the morning carbamazepine. Otherwise he is stable and active. Then, he has decided to continue with the same dose of carbamazepine (100 mg carbamazepine night and 100 mg phenytoin morning and night)  for the next six months, and to see him again in September.”

 

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Up Hill

Hola Kristiina,
I am so glad to report with a few lines from Tesfaye, how great Dani is doing. I am receiving as well other nice reports from Addis, that cheer me up. I hope these news make you as glad as I am.
November 15th,
Dani is doing fine. He is grown up and improving every day with his
functional activity and gross motor skills. His gait speed and his leg stride is improving.
He has been going to the special needs  school, with great interest as usual.
November 30th,
About Dani, he is doing very fine and his level of ambulation is
dramatically improving. He is now able to walk over 30 minute on different surfaces (slopes, down hill and on smooth surface).
And he is also attending his school with great motivation and interest.
December 10th,
Dani is doing fine and he has been following his regular physiotherapy

program with great motivation and interest as usual and he has been showing

improvement  in his gross and functional skills.

He will  follow up program with doctor Tim in Cure Hospital for the second
time after six months in December 21st to recheck his level of improvement after
he had had minor surgery one year ago.
Illona invited, Timo (physiotherapist), Sari(physiotherapist), and Tomi.

They were from Finland and spent some time with Dani.

Back to School

Hola Kristiina,
Here we go again for an update on Dani´s progress. Please find the latest details coming from Tesfaye:
February 21st:
“He is doing very fine and the wound at the left heel is fully recovered. This couple of days
on 17/02/20017 and 21/02/2017 we were in prosthetic orthopaedic center for the new
 left leg -KAFO, knee ankle foot orthopaedics- that prescribed doctor Tim for correction of knee and ankle, in order to keep normal posture and for stability during standing and walking.
Tomorrow February 22, he has appointment in Christmas hospital for his continuous follow up that he was appointed, after four months, with doctor Zenebe, for his epilepsy; though his epilepsy is controlled for a year and three months now.”
March 4th:
“On February 22, Zelalem and I have taken Dani to Dr.Zenebe for his continuous follow up.

After we have explained Dani is in good condition and his epileptic attack is almost controlled, the Doctor has decided to decrease the medication for five months.

On this week Dani has also continued to go back to the school again after four months rest due to the surgery. He is happy and excited.”

Dani In Progress

Hola Kristiina,

Tesfaye has regularly updated on Dani´s progress throughout the pre-surgery, surgery and recovery process. Please see daily excerpts:

Nov. 6th

“Today November six is his admission to the cure hospital. Now he is in the hospital with Alem (the Nani) and the Nurses informed me; the operation will take place by tomorrow. I will late you know everything by tomorrow. I believe every good things will happen for Dani.”

Nov. 8th

“Dani is in operation room now. I will update you after they finish.”
Nov. 8th
“Dr Tim, American Orthopedics surgeon done  Dani’s operation and it  went very well, it takes Dani two hour and half to wake up from anesthesia, by the time he wakes up he is

concision ,alert and oriented. Know he is stable and doing very well.”

Nov. 10th
“I have passed your kiss and your masege to Dani; He is getting better know.
This days the staff at cure hospital and the Nanis from Sile Enat were very caring and supportive for Dani. He is out (discharged) from hospital today; and he has appointment for follow up on November 30,because of the surgery and the cast Dani is in bed in Sile Enat and he is not allowed to sit or stand with his leg for three weeks.

I would like to thank on behalf of you for those who have been giving great support and care for Dani.”

Nov. 20th
“Dani is doing better although he didn’t like it to be on bed all day and night. He has almost made it, he has left with 10 more days for his appointment. Since he was on bed he was having constipation; now he is doing fine with ORS and home made foods. He has many stimulation and encouragement  as much as possible from the care givers and volunteers. I have also able to see him twice a day although i couldn’t do a lot of things on him beside bed side physiotherapy to avoid bed complication.”
Dec. 1st
Yesterday November 30 we take Dani for his appointment in cure hospital,and the long leg cast(cast above the knee) is changed to the short leg cast(cast below the knee) and has
measurement for ankle foot orthosis. Since in the past three weeks Dani was in cast,today when they remove and reapply the cast  it was very painful for Dani. Till he will get better this time is uncomfortable for him. In this second phase as he gets better from the pain he can sit on his wheelchair since the cast is below the knee and he will has better interaction out of his bed. And his next appointment will be for December 14. For this days I have planned to visit him daily and do physiotherapy until he will get better from the pain,that is mainly on the left knee because of three weeks in cast that causes sign of stiffness.

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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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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