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'My wish is to one day enjoy a normal life'

By Lerato Moeketse | Apr 02, 2012 | COMMENTS [ 62 ]

A YOUNG man who had to quit school spends most of his time indoors because of a rare genetic disorder.

Goodwill Ramothata of Alexandra in Johannesburg suffers from Xeroderma Pigmentosum.

The condition means that he is too sensitive to the sun and is forced to stay indoors.

He consistently wears a towel around the face and head to cover his wounds. The skin at the back of his head is so corroded it reveals his skull.

Ramothata, 21, was born with the disorder and lives with unbearable pain.

Holding back tears, he told Sowetan he hardly sleeps because of pain.

"My only wish is to one day enjoy a normal life like everybody else and wake up one day without feeling any pain," he said.

"I started getting treatment from Masakhane Clinic in Alexandra where they referred me to Chris Hani-Baragwanath Hospital. I was again referred to Charlotte Maxeke Hospital, where they did more than 10 operations on me."

As a result of the disease, Ramothata dropped out of Grade 9 in 2010. His unemployed father, Matome Ramothata, said he was worried that his son's condition was worsening.

He said: "When Goodwill was seven months old, he started developing spots that looked like freckle, we then took him to the Chris Hani-Baragwanath Hospital where a sample was taken and we were asked to return after two weeks."

The hospital informed the parents that there was something wrong with his cells.

"When he was seven years old he developed a growth on his upper lip and nose," the father said.

The hospital referred him to Charlotte Maxeke Hospital for his first operation.

Matome also said: "His upper lip was cut and later patched with a skin taken from his hands. Every year he was operated on, and the last operation was done in 2008.

"This year, we were sent back home because we were told that the operation we were hoping for will not happen as it will lead to brain damage in the long run," his mother, Josephine, said.

The family is unhappy with how the health system has been treating them.

Ramothata said he just wanted to have a normal life. "People in my community treat me differently, which makes me feel like I'm not human. I have a few friends who understand my situation and they are not judging me."

Spokesman for the Gauteng department of health and social development Simon Zwane said an investigation would be undertaken to establish if there were any compelling medical reasons that Ramothata could not be helped (at Charlotte Maxeke).

"Management at Charlotte Maxeke Johannesburg Academic Hospital will be asked to have a meeting with the patient's guardians to explain the treatment that the patient received and the reason for transferring him back to the clinic," he said.

COMMENTS [ 62 ]

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Thanks to my friend Gift for bringing this to Sowetan's attention maybe someone out there will help the young Goodwill Ramothatha and out Alexandra Tycoons as well will visit the boy's place and contribute and help the family as well.

Apr 04, 2012 8:56 | 0 replies

I can't imagine the pain that this young man endures...to think we cry over silly things where as there are those who experience serious and unbreearable pain on a daily basis. My heart goes out to him!.

Apr 02, 2012 2:4 | 0 replies

let's help if we can plz

Apr 02, 2012 1:25 | 0 replies

Bea tsohle matsogong a Modimo, ga a palelelwe ke selo

Apr 02, 2012 1:21 | 0 replies

Modimo Ntate ke rapela gore o thuse ngwana wa go a bo.ne pholo, o rile mo lefokong la go gore ka dithupa tsa Morena Jesu re fodile. le bolwetse bo ga se sepe fa pele ga go ka e le wena o tlhodileng mmele wa motho and e le wena fela o itsing gore matsapa a tswa kae ka bolwetse bona. ke mo lebogela le pholo e ke dumelang gore o setse o e mo file. Amen.

Apr 02, 2012 12:42 | 0 replies

@bottoms tx a lot my sister...stay blessed all the time..

Apr 02, 2012 12:13 | 0 replies

@ Asazi they can contact this number:0117872350 to arrange to go there.

Apr 02, 2012 12:1 | 0 replies

No i mean picture 3

Apr 02, 2012 11:59 | 0 replies

Look at picture 7 very horible!. Some desease or disorder are very scaring.

Apr 02, 2012 11:59 | 0 replies

lets go and pray bloggers...praying for Goodwill Ramothata.

Apr 02, 2012 11:57 | 0 replies

Dear God

Thank you for blessing me with health...and my healthy son...I will stop complaining today....Am sorry for you Goodwill and your family and I hope one day they will find a cure and help you bhutiza

Life inzima madoda

Apr 02, 2012 11:42 | 0 replies