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:
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“.
“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“.
“Dani is doing good and happy as always,He is keeping on his daily physiotherapy treatment“.
“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“.
“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“.
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“
Dani has been very active lately visiting doctors, doing analysis, MRIs, and meeting many people on the way, all kindly guided by Tesfaye, our Guardian Angel, and Zelalem, and the priceless support of the friends at Sele Enat.
Let me disclose a summary of events that took place:
From October 18th, 2014
“Zelalem and I, have got the chance to meet Dr. Chiwen again before appointment day since we have got MRI ready for today October 18,2014. Dr. Chiwen explained almost the same thing after he has seen a new MRI report, “in the right side of Dani’s brain, in ventricle there is cerebrospinal fluid which is not blocked and can circulate to the 4th ventricle, 3rd ventricle and absorbed in the brain circulation. He says that if there is blockage there will be edema on the lt (normal) side of the brain as well so that since there is no edema (accumulated C SF) and pressure, doing operation for shunting it will not bring any change for his general health” he has recommended for him symptomatic treatment (any problem which appear secondary to brain loss). I have attached for you the scan of the new MRI of October 17,2014 which Dr. Chiwen explained about.”
From October 23rd, 2014
“…at the moment the Doctor’s suggestion is, operation is not benefit him much, but instead following him for symptomatic treatment like controlling the epilepsy and other symptoms, last time on my email Dani was seen by Dr Andarge (neuropsychiatric) which mainly examine him for his epilepsy, he was order some laboratory test(blood) and EEG(electroencephalography which detect electrical activity from his scalp) tomorrow (24/10/2014) he will have an appointment for EEG exam, then on Monday (27/10/2014) we will take his laboratory and EEG result altogether to Dr. Andarge.”
So as you can perceive there are only reasons for optimism. We are sharing our joy with Dani because we know he his health can only improve.
I often think about the future day Dani and I sit together and chat about the past. About the days he struggled on daily basis to improve his condition, and about the numerous hours exercised to gain mobility. I picture this conversation among laughter and emotions. But it is rather a conspicuous picture.
I am so confident that this is going to happen, Kristiina, that no momentary backlash suffered or inflicted to our project will impact its objective. Furthermore, troubles on the way will only encourage us more.
This, Kristiina, brings me to the never forget to thank all those who keep committing, helping, reading, commenting, and thinking about Dani. Without them, this is not being possible.
Now, let me show you some Dani in action. This is his day by day effort, coordinated by Tesfaye, our Guardian Angel.
*Featured Image: Niki de Saint Phalle, at Giardino dei Tarocchi. Capalbio, Tuscany, Italy.
Right before our celebration of midsummer-fest, I wanted to share with you Dani’s gorgeous hyperactivity and optimism with Tesfaye.
Sitting on the chair on his own.
Now, he’s grabbing toys.
Yeah, you can do it, Dani!
Oh, that’s a cool ball!
..and that is so much fun!
PT IN SILENAT ORPHANAGE
Kristiina Juutinen passed away on February 15, 2014 in a tragic accident in the Danakhil Depresion, Ethiopia. She was a brave and dedicated expectant mother who committed part of her life to help alleviate the suffering of those in need. She volunteered and worked in places like Namibia, Zambia, Somaliland, Ethiopia, Nepal, Italy, and Finland. During her last period in Ethiopia she engaged in curing Daniel Abraham, an eight year old orphan at Sele Enat Mahiber affected by Dandy-Walker syndrome. She liaised with different doctors and aid workers to provide treatment and a potential surgery that would lead to Dani’s recovery.
The Juutinen Lisko and Santamarta Perez families are committed to continue her legacy setting the “Kristiina Juutinen Memorial Fund” in support for Daniel Abraham. They will not recover Kristiina to their lives physically, but wish to dedicate their energy to channel Dani into a healthy condition, from which he could grow and develop as a normal child.
The families humbly suggest to those who are willing to send flowers or condolence cards for Kristiina’s funeral to, instead, transfer its value into Kristiina Juutinen Memorial Fund. They would appreciate the support of any other donation for the same purpose. Donations can be transferred to:
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 improvement is our utmost desire and focus.
Memorial Fund audit will be available to donors upon request.
Daniel Abraham’s surgical intervention and recovery process progress will be regularly posted in this blog, as well as operational requirements and request for potential support.