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.
“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.
A few more friends have joined efforts to continue supporting Dani. Tesfaye explains it at the end of the below letter. As you read, Dani keeps motivated. He’s been medically assessed several times for the past months, and presumably he will be again. He takes it as a game. His mood is contagious not only to those close to him, but to all others in the distance, supporting or following. I believe we are starting to learn from Dani.
How are you? On 02/11/2014, we have mate Dr Zenebe after we have collected Dani’s urine specific gravity test result. The result indicates normal. He has recommended to test his urine specific gravity repeatedly with in intervals to see if there is some changes. he has also made some modification on his anti epileptic drugs that he thought Good for Dani’s situation,
Dani is taking drug combination of phenytoin and phenobarbital with increasing dose from time to time so far, but the Doctor modify for him 100 mg of phenytoin BID (two times per day) and to stop phenobarbital gradually to avoid it’s side effect, with close follow up of drug withdrawal symptoms (symptom that occur secondary to sudden discontinuation) that will happen due
to the change made.
Dr Zenebe recommended to see Dani with follow up if there is new symptoms and he gave us a minimum appointment of two month for January 31,2015. He has explained as well, if there is any sign and symptom before the appointment day to take Dani to him any time.
He has also suggested that if there is symptoms, as he is going to measure Dani’s intra-cranial pressure in the ventricle by making some hole through the scull and if there is pressure to apply shunting through the same spot that is used to measure the intra-cranial pressure, if there is no pressure to close it again.
While we have made all this multiple doctors visits from place to place Zelalem made comfortable situation for Dani by organizing caregivers driver, drive us himself and following closely Dani’s situation, i would like to thank him on behalf of you and Dani.
with best Regards“
Following, please read the current status on Dani´s recovery. In addition to being steady on physio, we keep looking for solutions. Check out Tesfaye´s lines from September 24, 2014:
“How are you doing dear Roberto,(..)
About Dani’s surgery condition,if the entire surgery plan is taking place her in Ethiopia,i think it will be more supportive if he would be seen by another Doctor as well, that will help to identify a Diagnosis two or more Doctors agreed on, to see similarity of their ideas and to see whether there is willingness to do the surgery here or not. There are two or three senior neuro surgeon in Addis. One is the one you met last time,Dr mersha. I have tried to discuss with office in the silenat and Zelalem respond me in the same way, that will help if he would be seen by more than one Doctor.
If you would agree with this ideas it will be Good, during Dani is going to see the Doctor, if there is one person from silenat office, one person from your side (..) or any one you think of could able to follow may be i don’t know there
might be continuous follow up and myself, I hope that will create good understand about Dani’s surgery situation among all.
About orthopedic aid that will be helpful, I will late you know.
Thank you very much.“
We have got further reports on Dani’s syndrome, which probably dates back to a possible stroke he suffered during his early days or even while in his mother’s womb. One of its effects is hemiplegia, which developed after an atrophy in the right side of his brain, due to a lack of blood irrigation throughout the years. This made a vacuous on the right side that has been gradually filled with brain fluid. The fluid is pressuring the left side of the brain and slowly harming this side too. The hydrocephalia could be attenuated through neuro-surgery with a shunt, although the risk of fatal brain infection is rather high, especially with Dani’s living conditions.
With such prospects, Kristiina, we are going to look for possible clinical solutions out of Ethiopia. As well, we would like to improve Dani’s living conditions by establishing a consistent amount of regular physiotherapy sessions and search for educational opportunities, that could provide him with some future independence.
Kristiina, as you can read Dani has to learn to live with “Dandy” and we believe we can support him in this endeavour.
*We would like to thank the Black Lion and Bethel Teaching General hospitals in Addis Ababa, Ethiopia.