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.
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.
Here you´ve got the latest news about terrific Dani:
October 19, 2015
we have taken Dani for his appointment on October 16 to Dr. Zenebe
since there is no any epileptic attack or any other syptoms, he has just
decided to continue with Dan’s current epileptic medications.
And he has appointed us after three months on January 14, 2016, to see if there
is any change after exposure to the external enviroment, class and temperature change
while he spent outside the compound.
I have attached Dani picture with the Zelalem in Chrismass hospital.
October 15, 2015
“Dear Roberto, how are you?
I have passed your big hug and warm greetings to Dani.
He is happy.
Tomorrow October 16, Dani has appointment for his follow up
with Dr.Zenebe. We will take him in the morning.
I have attached Dani’s pic while he was giving precast for KAFO.
Thank you for everything you are doing.
Kristiina, Tesfaye is our real angel.
Dani is growing, and soon will go back to school. Let me show what Tesfaye explains about him:
How are you?
Yes it is true Dani is growing.These days he is very happy. He has spent by
singing traditional songs with all children for the new year. About the epilepsy he still
doesn’t have attacks after the antiepileptic drug (…)
modification made by the Doctor for almost three months now. I believe the
medication is helping for control.
About Dani’s school, they told me the school teachers are on meetings.
I will let you know as soon as I get the information when teachers are going to
start the class.
I keep telling to Dani about you that you are thinking about him every time…
i have attached Dani’s pics for you, while Dani is singing with his own words, as usual.
It’s been a while since the last time I told you events about Dani. We have managed to sort out future plans, and that has been positive.
Dani attends Mekanisa school since last month, and this is Tesfaye’s recount:
How are you doing? I am sorry for my delay to respond immediately, that is till I will get full information about Dan’s class situations. The past days there have been letter communication between the special need school and Sele Enat orphanage and we have also physically appeared two times to explain about Dani and to see the environment. The psychologist as well come to see Dani and he has suggested that the class will be helpful for him and to progress him to the next level based on his understanding, activities and improvement in the class. The class include both activity of daily living (washing, brushing teeth, toilet use…..), skills (writing, reading alphabet….) and sport class. From the time we told Dani that Roberto has working hard for you to start class. His first word to tell in the compound, for children, staffs, volunteers and for guests come to visit he always saying that “I am going to start class”. And not only Dani but also we all become happy about his class.
On March 17, 2015, Dani has started his first class in Makenisa school in one of the special needs class, Zelalem ,Yifru (driver),Belaynesh(care giver) and me accompanied him to the school. While he get there Dani gave his usual warm greeting and happy face to his new teachers, they respond they are very happy to meet him as their student and they provide place to sit and continued to ask him and listen his words. Then Selam (one of his teacher, you could see her in the picture) give for Zelalem and me to read and fill duties and responsibilities to be expected and done for Dani.
Specifically the school didn’t ask regular payment at the moment except to provide the requested materials and his transportation regularly.
I hope it looks good place for Dani at the moment, it will be the place he enjoy and learn more from it.
So, Kristiina, Dani’s physiotherapy is continuing and we all expect improvements progressively.
One year went by since the beginning of our project, and two years are soon to come since we first met Dani. Both events are glorious in my life, and nothing but delight and encouragement came along.
Dani is living a comfortable existence, in his mind. Probably because he did not have the chance to live any other. I keep motivating people around him to try to reach a sustainable progress. At times, it is unknown to me what the extend of my efforts is, and I strategize new ventures.
The result of the last one is following:
As I have mentioned for you,today march 4,2015 we have taken Dani for his appointment to Dr.Zenebe,after he has seen Dani he has asked about anti epileptic drug the he has ordered and how Dani is doing with it?we have explained for him that after the combination carbamine and phenition as he is not show any symptom and his general appearance looks good and the Doctor suggest that,as it is good to keep follow him with appointment and he has given a three month appointment for may,2015 since he is doing fine but he has also recommended to bring him in case of something happened.and he has ordered his anti epileptic drugs for three month and to continue with it.I will let you know about his special need class as soon as he has made his psychological assessment.”
So, yes Kristiina, Dani will likely attend special needs school. While we keep waiting for a decission on a possible surgery, Dani will try to use his time more effectively.
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“
Upon return from my journey up North, I would like to share some of our last experiences about Dani. Although geographically far, I am closely sensing the situations he is going through. Our friends and colaborators explain vividly the procedures undergone and the events lived. Dani is enjoying it, and that keeps us steady on the recovery path despite the occasional delays.
The latest report coming from Addis reads something like this:
“Dani seemed a bit tired compared to the last time, but he was still in a good mood and it looks like the physiotherapy is helping. He was able to stand up and take a few steps with help from the crutch. He now has the orthopedic aid on his foot and I think this is helping him to stand. Tesfaye performed about 1,5h physiotherapy and Dani was really responsive to it, although he did seem quite tired at the end of the session. He is now asking to go to the toilet very often (3 times in 2 hours), which Tesfaye says has increased in the past month.”
Dani takes it all as a game, and that is a great advantage that softens the challenges of his regular physiotherapy sessions. His attitude supports efective exercise for the timeframe we wait to move on with the forth visit to a clinical specialist.
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.“