Brave Lizzy Hendrickson, 3, is fighting painful condition Epidermolysis Bullosa Simplex which means her skin blisters at every touch or graze
The illness dubbed 'Butterfly Disease' means she's unable to shower or run around too strenuously in case she tears her skin
She wears bandages constantly on her legs and has to have her painful open wounds dressed every day
A little girl from Phoenix, Arizona, has been diagnosed with a rare genetic condition which means her skins breaks into agonizing blisters at the slightest touch.
Lizzy Hendrickson, 3, has Epidermolysis Bullosa Simplex or 'Butterfly Disease' where the skin is as fragile as an insect's wing, 12 News Phoenix reports.
It means ever since she was born her skin painfully blisters on being grazed- even through the comforting arms of her mom and dad.
She can't do simple tasks without putting herself at risk and to run, play and fall like other children would likely necessitate a trip to the emergency room.
She can't be showered because of the pressure of falling water and wears layers of ointment and bandages around her legs - the worst affected parts of her body.
Changing her out of her diapers as a baby was a two person job - her parents told the website.
One had to focus on holding her down and stopping her from wriggling so she didn't break her skin from the movement while the other removed the diaper gently with two hands to ensure it didn't tear her by sticking to her body.
'There’s nothing that I can do, as a mother, to make her pain go away,' Kristin Hendrickson told the local website.
'You just hope that it ends quickly. But that kind of makes me feel like a failure as a mother, that I have this child that is in pain or gets hurt and I can’t protect her.'
'It’s a horrible feeling as a parent. You feel totally out of control.'
The incurable disease affects around 1 in 50,000 and can vary in severity with most cases at the very mild end of the scale, a much less serious illness than Lizzy's.
On the other end some children are unable to eat solid food as their throats and tongues are affected with food tearing at their bodies from the inside.
Lizzy is able to wear normal clothes but anything sharp like a zipper is strictly banned.
Her arms can go un-bandaged but are still sensitive and she often gets blisters on her face.
Her parents use ice packs to relieve the pain but are daily forced to pop large blisters that form across her body.
Her mother, Kristin, 40, a nurse said the diagnosis was heartbreaking.
'I can’t possibly describe how I felt at the time,' she told the website. 'I thought my child had a death sentence. It was unthinkable to me. It was unbearable.'
Her father Rob, a teacher, 49, recalls looking up the disease when she was first diagnosed.
'Boy, was that a mistake,' he said.
The couple have developed a close relationship with their specialist Dr Ronald Hansen.
The head of dermatology at Phoenix Children’s Hospital discovered her condition by simply rubbing his pencil eraser on the remaining skin on her leg - soon it was tearing
'We had a number of very interesting conversations with Dr. Hansen very early on,' Rob said. 'What do we do with her? Do we put her in a bubble? Keep her safe? Or do we make her a normal kid and deal with the consequences'.
The family were able to count their small blessings that their little girl wasn't suffering from one of the very extreme types of the disease. Her eating isn't affected so she can go to school so long as she, and everyone around her, is extremely careful.
Tidak ada komentar:
Posting Komentar