Boy, 7, reveals how he's battling horrific ultra rare skin disease that means he can't close his eyes and has to moisturize SEVEN times per day

A 7-year-old boy revealed how he's battling a horrific ultra-rare skin disease that means he can't close his eyes and has to moisturize seven times per day. 

Carter Padelford, of Las Vegas, Nevada, was born with two rare skin conditions called lamellar ichthyosis and ectropion, causing his eyes to stay glued open - even when he sleeps. He was later diagnosed with autism. 

Scaly, dry skin covers his body head-to-toe, and makes him unable to perform daily activities - or even play with his friends. 

'My skin was hurting super bad when I woke up,' Carter said to FOX5. 

His mother, Shai Bresee, who raises Carter alone, said she moisturizes her son's body at least seven times a day with special products. 

'His body over produces skin at rapid rate but his skin cell turnover isn't up to par to release the dead skin cells,' she told the Las Vegas outlet. 

Carter Padelford, of Las Vegas , Nevada , was born with two rare skin conditions called lamellar ichthyosis and ectropion, causing his eyes to stay glued open - even when he sleeps. He was later diagnosed with autism

His mother, Shai Bresee (pictured) who raises Carter alone, said she moisturizes her son's body at least seven times a day with special products

Scaly, dry skin covers his body head-to-toe, and makes him unable to perform daily activities - or even play with his friends

But his disease effects a lot more than dry skin, Bresee said. 

With ultra-sensitive skin, playing with friends in the park is a challenge for Carter - who wear a cooling vest if he does. 

'Why does such a great kid have to go through all of these every day struggles just to experience these normal day to day things,' Bresee said. 

Carter is set to undergo a skin graft surgery on his eye lids, a procedure that will hopefully allow him to finally close them for the first time in his life. 

'I'm going through a lot. It hurts, but I have to go through it until I get surgery and then it won't really hurt anymore.' Carter said.

'He will struggle no matter what we do so all we can do is help him struggle with less things,' Bresee said.

The family set up a GoFundMe to help with the costs of surgery. 

They currently raised $19,728. 'He is 7 years old now and what you may not know is his ichthyosis causes a condition called ectropion of the eyes,' she wrote in the fundraising page. 

'In short carter can not close his eyes. He cannot blink, he sleeps with his eyes open and is often experiencing lots of pain and discomfort because of this. We will be driving up to La Jolla California multiple times to see an incredible oculoplastic surgeon who will hopefully be able to lift carters lower eyelid by making a tiny incision at the corner of his eyes and stitching it together.' 

'We are hoping that procedure will be followed by skin grafting for his upper eyelid to create a hood for his eye and allow him to be able to open and close his eyes comfortably. As you can imagine this will be a painful and strenuous process.' 

Carter was diagnosed with the rare genetic condition just three days after he was born 'as red as a tomato' in November 2016.

The disorder affects one in 100,000 people in the US and disrupts the normal formation of the outer layer of the skin, causing sufferers to develop dark, plate-like scales. 

With ultra-sensitive skin, playing with friends in the park is a challenge for Carter - who wear a cooling vest if he does

Carter is set to undergo a skin graft surgery on his eye lids, a procedure that will hopefully allow him to finally close them for the first time in his life

His parents Shai-Anne and Zach Padelford, both 21 at the time of his birth, were forced to slather him with coconut oil and shea butter and give him two oatmeal baths a day to soothe him 

His parents Shai-Anne and Zach Padelford, both 21 at the time, were forced to slather him with coconut oil and shea butter and give him two oatmeal baths a day to soothe him.

They would also have to exfoliate his scales away every three days - a painful process which they would dread - until they discovered Canabis oils as a method of treatment. 

It worked wonders at the time - it's unclear if Sifford still uses the oils or if they are still as effective on Carter's skin. 

'When he was born, his skin was as red as a tomato and so tight to touch,' his mom recalled at the time. 'It looked painful. He couldn't even close his eyes. 'He was diagnosed with lamellar ichthyosis three days later.

'Basically it means that his skin builds up into scales like a fish and it limits his ability to move. It stops his ability to sweat which means he's intolerant to temperature.

'Babies with this are at a greater risk of Sudden Adult Death Syndrome (SIDS) because if they get too warm they can suffocate,' she added.

'He couldn't even close his eyes. 'I was using a no-touch thermometer about eight times a day to keep his temperature stable.'

Shai tried to treat the condition with the medication AmLactin, which was recommended by doctors, but it didn't seem to work.

Shai tried to treat the condition with the medication AmLactin, which was recommended by doctors, but it didn't seem to work

There is no cure. Treatment focuses on lifelong use of moisturizers to make skin more comfortable, less dry and to prevent cracking. Medication can help to reduce scaling, while eye drops can prevent dryness (Carter pictured with his mom Shai) 

'Doctors didn't offer us much advice or help. I feel they neglected us because they didn't know what was going on,' Shai-Anne said in 2018. 'They told me to keep him covered and to avoid baths and to come back in two years when he was two.

'It was traumatizing. There were no road signs and so few treatment options,' she continued. 'For a while we used to do two oatmeal baths a day with baking powder which helped disinfect his skin and exfoliating him every few days.

'I used to spend my days just lathering him with coconut oils and homemade organic creams.'

After reading an article on the impact cannabis oils can have on chronic skin conditions, Shai-Anne, a medicinal marijuana user, decided to try the oil on Carter in August 2017.

The parents said Carter was a completely different toddler than he was before the treatment and his scales almost completely disappeared.

'Seven months later he doesn't even look like the same child,' Shai-Anne said. 'He used to have no hair because of his scales but now his hair is starting to grow.

Carter was diagnosed with the rare genetic condition just three days after he was born 'as red as a tomato' in November 2016

Lamellar ichthyosis is estimated to affect 1 in 100,000 individuals in the United States

It can be caused by genetic or inherited abnormalities that affect normal skin shedding

After reading an article on the impact cannabis oils can have on chronic skin conditions, Shai-Anne, a medicinal marijuana user, decided to try the oil on Carter in August 2017

In 2018, the parents said Carter was a completely different toddler than he was before the treatment and his scales almost completely disappeared 

'He used to have open sores that would be bleeding, but his skin has almost completely cleared up.'

Carter's skin stopped splitting and cracking and for the first time, and he was able to sweat like a normal child.

'His progress has been insane,' Shai-Anne added. 'His eyes could never close completely but since I've been using the oil on his eyelids they are almost closing all the way.'

Lamellar ichthyosis is estimated to affect 1 in 100,000 individuals in the United States. It can be caused by genetic or inherited abnormalities that affect normal skin shedding. 

There is no cure. Treatment focuses on lifelong use of moisturizers to make skin more comfortable, less dry and to prevent cracking. Medication can help to reduce scaling, while eye drops can prevent dryness.