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Adoptive Mother Has Strong Hope For Daughter With Rare Skin Condition

Born in 2010, Doctors said children with the condition do not survive past two years. But she is still alive today   Grace Johanneson was born with a rare skin
14 Dec 2018 10:00
Adoptive Mother Has Strong Hope For Daughter With Rare Skin Condition
Leonie Johanneson holds daughter Grace in Savusavu. Photo: Yogesh Chandra

Born in 2010, Doctors said children with the condition do not survive past two years. But she is still alive today

 

Grace Johanneson was born with a rare skin condition and was given up at birth by her birth parents. But now with the love of her adoptive mother, she has a chance at a happier childhood.

Grace was born at the Labasa Hospital in 2010 with a condition called Harlequin Ichthyosis, an extremely rare skin condition in which there is rapid growth rate of the skin.

According to the Turkish Journal of Obstetrics and Gynecology, only 200 cases have been reported worldwide so far.

Grace was two years old when Leonie Johanneson adopted her. Ms Johanneson, who is in charge of Lomani Au Children’s Home in Savusavu, said that she was overwhelmed bringing Grace in her life.

“I wanted to adopt her right away, at the time I saw her back in 2012,” she said.

She said that with the assistance of the social welfare, she has been able to get Grace under her care.

“Her parents left her at birth, but no person deserves that,” she said.

She was also informed by the doctors that children born with the condition do not make it past two years.

“I prayed really hard for her, but she is a fighter and I know that,” she said.

“Now she is one of the biggest inspirations to me,” she said.

She said that one of the challenges faced by Grace was the frequent stares she received.

“But she manages to overcome that,” she said.

Ms Johanneson said Grace is believed to be the only survivor of the disease in the South Pacific.

“Her skin condition means that her skin grows much way faster than normal people’s. She gets a new layer of skin each day,” said Ms Johanneson.

“But I have been able to provide all the comfort she needs in her life,” said Ms Johanneson.

Edited by Jonathan Bryce

Feedback: yogesh.chandra@fijisun.com.fj

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