Genetic Encephalopathy, A Rare Brain Condition Overhauls life for the Canneli Family

Baby Dunia

When you walk into a hospital carrying a sick baby you expect to find a doctor who will reassure you and treat your child having established the condition affecting your child. But just imagine how devastating it can be that after conducting tests, your doctor looks at you and tells you that this is a rare undocumented treatment and that they have never seen a case like it before. This is what befell Antoine Michel Cannella and his wife Teresis Wangui, the parents of Master Orazio Salvatore Dunia.

The birth of Baby Dunia

Baby Dunia set for MRI test
Baby Dunia set for MRI test

Baby Dunia was born a normal child on 18/09/2015 and the doctor gave them a clean bill of health and sent them away.

“My pregnancy was not planned to start but we were excited after the news, I had a difficult time probably 7 out of the 9 months, then suffering from Adenomyosis which at the time was not diagnosed yet, but my doctor said the baby was fine & when he was born he was checked & we were released after,” explained Wangui during the interview with Afromum.com.
But the joy that usually accompanies a newborn child was short –lived as the parents soon realized that there was something wrong with their baby.

“He had a difficult time sleeping at the age of 5/6 months & could not feed easily by the bottle, was not developing as a baby should & because of these we as a family realized that our son had an issue & had to make the difficult decision to venture out of Kenya to come to France but unfortunately it took time before we could organize the trip, we finally got here in August 2016 & started the process,” said Wangui.

At the Robert Debre hospital in Paris, the doctor would awaken them to the fact that their baby was suffering from a rare form of genetic encephalopathy. Encephalopathy is a general term describing a disease that affects the function or structure of your brain. There are many types of encephalopathy and brain disease. Some types are permanent and some are temporary.
In this case, of genetic encephalopathy, the doctors performed a DNA testing on the couple as they did not have any records of the same results as the ones Dunia had.

We gave our blood both me & my husband to have our DNA tested to know who is the carrier. We are yet to get those results as you may know DNA testing is expensive & takes time to get results.

Affected Development

As a result of his condition, Dunia’s condition part of his brain did not develop meaning it was missing. This means that it would be difficult for him to develop like normal children his age and this means he would have difficulty feeding on his own, weaning in a normal way. He takes specially made food and feeds through a gastro-tube as his inability to digest food makes it land directly into his stomach. Dunia is also not able to walk as his mobility has also been affected by his inability to balance.

“He has no balance to do that; his abilities will be limited as it is a severe condition. He has a specially designed feeding chair, stroller & mattress sure to his bone structure & for comfort.”

Baby Dunia with her parents
Baby Dunia with his parents

Treatment

The treatment for little Dunia started with a number of Tests such as 3 ECG, 3 Brain MRI, 2 chest scans, 2 stomach scans. They were subsequently followed by 3 operations done on him last year he underwent one that would enable him to feed well through the gastro-tube. The other one was to help him breath better and another one for muscle alignment. As if that is not enough for a boy who is barely five years old, Little Dunia has to contend with medication on a daily basis. He has medication that he takes for his daily routine, for brain development, another to help relax his muscles & reduce pain, to help in digestion & to help protect his stomach lining because he’s gastro-tube eating, food goes directly to the stomach & thus the protection.
In addition to all that he has to go for checkups on a regular basis and various kinds of therapy. Although there’s treatment, there is no cure since the brain is complex & as far as research is concerned, our doctors told us it’s very low at 20%.

The Sacrifice

So what does a typical day for the family? Miss Wangui paints a clear picture of us,
I make his breakfast at 7.00/7.30 am, we do aerosol therapy for 20 mins and before taking breakfast, we prepare the meds & he will start his breakfast at 9 am and finish after 2 hrs, because he is feeding with gastro-tube it takes time to finish his meals. He will take a nap at 12 for an hour then before lunch have 30min of massage for his joints & muscles, 30min play time & prep his lunch & meds which he takes at 2 pm reason for late feeding is to give him time between the meals, because he is not active as other kids & the duration of feeding, digestion takes time, 5 pm nap time, between then is play time & touching/music/visual therapy, 7 pm bath combined with massage and joint/body movement as it is very relaxing in the water. Its advisable to do lots of water therapy, play time and aerosol therapy before dinner.

We prepare food to liquid form for it has to pass by tube. It’s a busy day. I once told my sister, it’s like taking care of 5 kids who are between newborn and one year at the same time. We have learned how to balance because we decided that we join his world but we also make him join ours. Just like all parents it’s every minute commitment, love, God & support from family & friends that keeps us going, we are lucky that our son is both Kenyan & French because he has had an opportunity to come here & get the best medical care I know, he is covered as a French citizen & that makes it easier on us.

Apart from the daily taxing routine, Terry, Wangui also suffers from a condition known as adenomyosis which is akin to endometriosis only that in this case, Adenomyosis is a condition in which the inner lining of the uterus (the endometrium) breaks through the muscle wall of the uterus (the myometrium). Adenomyosis can cause menstrual cramps, lower abdominal pressure, and bloating before menstrual periods and can result in heavy periods.

This condition will see Terry in bed for a long time each time and this takes her away from her son.
“I have to get my uterus removed if the hormonal coil will not help reduce the It is difficult because half of your month is mostly taken by my condition, especially when it’s severe pain & having to be in the hospital for up to a week but I have a supportive partner & he sometimes get help from the family, it’s easier in Kenya when it comes to having people to help, here we end up having to ask for help at the rehabilitation center where he is currently at,” said Wangui

The Canneli family had no plans to go and live in France at all. However, since it became apparent that the condition of their baby would be costly and required specialists, the move became a matter of when and not if. This meant that paused dreams & projects but we are hopeful to get back to it as my condition didn’t help

Baby Dunia with Mom
Baby Dunia with Mom

Rehab

As established above, Dunia has to stay in a rehab center for about half a month as his mother deals with her condition. At the rehab, there will be someone to look after him. Unlike in Kenya where you can readily get help from other family members it is hard to get available help and in such a case a rehab presents the best opportunity.

In the rehab, there are Doctors, nurses, therapist & assistants at his disposal and doctors visit each morning then therapy morning and afternoon including; physical I.e joint movement, sitting, muscles, body positioning, aerosol/suction & educational I.e teaching to grab, touch, swallow, tongue movement, sight & sound.

There’s a lot of public/private collaboration in France for rehab centers & this why you have many centers in the country.

The Cost

One of the reasons that the family moved to France is that little Dunia could get specialized treatment under coverage. Financing treatment from their pockets would have been very expensive all things considered. For instance there is the cost of equipment like 600 Euros for mealtime chair, 600 Euros for special stroller both issued at the rehab, 400 Euros per month for meds, 2500 Euros per day at the ICU where he stayed about 2 1/2months combined, 1000 Euros per day in normal ward and they stayed for months and we have been back several times.
There is also 1000 Euros per day at rehab same as above, long duration, ambulance 250 Euros multiple times, He has 3 issued machines, for feeding, aerosol therapy & suction therapy, specially designed mattress, diapers, his food also is specifically prepared of course at a cost. There was also the cost of the three operations and various tests that were done to the resilient boy. Other needs will come up as he grows & as his needs change.

Wangui thanks God that she was able to move to France to get the available help for her child. She is not sure that her child would get the same kind of help at an affordable price unless in public hospitals or through help from Non-Governmental Organizations.

“Our hospitals, our doctors & the staff need to be supported, we need doctors to work harder for patients than they are currently doing in my country, we need more information & training on women health and such conditions, my husband & I went through alot by falling sick & having to spend your savings & end up having to find medical care outside the country is the reason that made us bring our son here, ” said Wangui as her parting shot.

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