Family with crippled children cries for help

Oct 23, 2019

Just like any parent who sees his or her children growing up and playing in a compound, Ocung and Ayuru said they did not think any of them would develop any complication.

KABERAMAIDO-A family of four crippled children in Okapel ‘B' village, Okapel Parish, Aperkira sub-county in Kaberamaido district has come out to cry for help over unclear circumstances on how their four children became crippled.

"I produce them when they are very okay but all of a sudden, they become crippled when they reach around seven to eight years", Rose Ayuru a  40-year-old mother said.

Ayuru got married to Michael Ocung and first produced two children who are okay.

The family thought it was going to be the same for the other children but instead got the shock of their life.

The third child of the family Enoch Ocung was born in 2003 while the fourth one Misaki Esutu was born in 2006.

The fifth child t born in 2008 is Lazarus Opolot and then Amosi Erou in 2011.

All the four children became crippled one of them passed on.

 ose yuru carrying one of the crippled children Rose Ayuru carrying one of the crippled children

 

Just like any parent who sees his or her children growing up and playing in a compound, Ocung and Ayuru said they did not think any of them would develop any complication.

"As a Christian, I had faith that my children would grow up normally just like any other children.

However, the situation first changed with Ocung when he reached seven years" Ayuru said.

Ayuru said her son Ocung (junior) started Primary One when he could walk well.

Before finishing primary one, she said her son started developing weaknesses in the limbs and could not walk easily.

She said whenever his son could try to walk or run, he could fall on his own. This made him drop out of school while still in Primary One.

"I tried getting a stick for him to use but still the situation went out of hand till the boy could not walk", Ayuru narrated.

She said during all those changes, she took him for treatment at Abirabira health center II and later to Kaberamaido Health center IV.

Ocung said there was a time he was referred to Kumi and Mbale hospitals for the spinal cord scan but he failed to raise sh300,000/= that was needed at that time.

As if this was not enough, when the situation worsened where the boy's legs became small, he went up to Soroti Referral Hospital to have the child treated but all in vain.

Ocung became fully disabled and could not walk anymore and became crippled.

 "It is then that I started having a hard life as I could not move anywhere.  I have a task of carrying him every time to shift him from one place to another", Ayuru said.

Meanwhile, Ocung said they had to sell all the key items they had in their home like animals and crops to try to have a better life for their son. However, all that was spent has never seen any better situation for their son.

Whereas the family had hopes in the other three remaining children, the same phenomena befell the rest of the children.

One of the children  (Misaki Esutu)  died on July 2019.

Each of the two parents had mistrust thinking that it was from their family lineage with genetic phenotypes being dominant in their children at the moment.

When the biological background is traced from both parents, Ayuru and Ocung both said they had not had any such a kind of a happening in their lineages.

"We tried asking some of our clan members whether such a situation was there sometime back among any of our descendants but we were told there was nothing to relate to at all. Of the four children, one died while crippled while the remaining three are also in the same status.

Ocung said what puzzles him most is the failure to know the disease causing the crippling of his children.

Looking at the situation they were going through, he said he needed some money to begin with an income-generating activity to push on with life since the family had lost items that would support them.

 ichael yuru with his family including the crippled children Michael Oyuru with his family including the crippled children

 

Medical explanation

According to Doctor Simon Enangu of St. Francis social center in Soroti district, who last handled the children said the situation had also defeated them.

He said when the children were taken to them; they did all the necessary tests that one would imagine but they failed to get the cause of the disability.

He said they did all the genetic test but nothing related could be got linking to the cause of the crippling of the children.

Enangu said one of the children who died after physiotherapy (Esutu) had improved but later developed sweating, becoming anemic and later died.

"All the neurology test that one would think of were also done but the cause of the complication that the children had could not be got.

Our findings also show that the disability is not being caused by any illness", Enangu said.

He said from the medical perspective, they have had done their part and now are asking for God's intervention.

He said they advised the family to keep on praying since hard things can be solved by God.

An organization intervenes

Upon learning this kind of condition, Share An Opportunity in Uganda (SAO) now operating Kaberamaido district reached the home.

One of the officers in charge of SAO, Timothy Okoda said they had to take the children to Soroti Referral hospital for more checkups.

Okoda said they had secured some wheelchairs for the three remaining children.

"We have done what we can to support the children but we are limited with resources", Okoda said.

One of the local persons who has been very close to this family, Pius Ochana said he was shocked at what had befallen Ocung's family.

"I have ever moved with these children with their parents to Soroti and St Francis Social center to see what goes on.

However, it is surprising that there has been no known cause of this kind of disability", Ochana said.

He said they have remained with trusting God that the condition will get solved.

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