Doctors say girl, four, with rare form of albinism will eventually need ...

Zerina Nelson loves being compared to the Disney princess Elsa because they have the same white-blonde hair and pale skin.

But the four-year-old from Mesa, Arizona, is actually suffering from a rare form of albinism that is destroying her lungs.

Her mother, Aura Nelson, realized something was wrong with her daughter when she couldn't control her eye movements at three months old.

After going through multiple doctors, one of whom eventually ordered a DNA test, Zerina was diagnosed with a rare hereditary disorder called Hermansky-Pudlak syndrome.  

Doctors told Nelson that the condition will cause Zerina to develop a lung disease that will scar her organ tissue and leave her in need of a life-saving lung transplant by the time she's 30 years old.

Zerina Nelson, four, of Mesa, Arizona, was diagnosed with a rare hereditary disorder called Hermansky-Pudlak syndrome. Pictured: Zerina dressed as Elsa for Halloween in 2016

It is characterized by little to no color in the skin, hair and eyes as well as blood platelet dysfunction which causes excessive bleeding. Pictured: Zerina at the park in 2017

Zerina Nelson, four (left and right), of Mesa, Arizona, was diagnosed with a rare hereditary disorder called Hermansky-Pudlak syndrome. It is characterized by little to no color in the skin, hair and eyes as well as blood platelet dysfunction, which causes excessive bleeding

Her mother, Aura, realized something was wrong with her daughter when she couldn't control her eye movements at three months old. Pictured: Zerina as a newborn in 2014

Her mother, Aura, realized something was wrong with her daughter when she couldn't control her eye movements at three months old. Pictured: Zerina as a newborn in 2014

Nelson, 26, said it took a few months before she could find a doctor that would address her worries.

'I was very concerned when she was about three months old because she seemed unable to control her eyes,' Nelson, 26, said.

'They seemed to constantly be moving and she didn't seem to follow objects well, which made me concerned that she may be blind.

'Her first pediatrician said that she was just too young to control her eye movements, but that diagnosis didn't feel right to me.'

A second pediatrician referred Nelson to a children's hospital for genetic testing. Within a few weeks, Zerina was diagnosed with Hermansky-Pudlak syndrome (HPS). 

HPS is a rare hereditary disorder that is characterized by albinism as well as blood platelet dysfunction, which causes excessive bleeding. 

Signs include pale hair, eyes and skin; poor eyesight with vision acuity of 20/200, which is considered legally blind; and prolonged bleeding after accidents. 

Zerina bruises very easily and Nelson needs to constantly apply sunscreen to her daughter's highly sensitive skin. 

Zerina bruises very easily and needs to take medication that clots her blood if she gets a scrape. Nelson also needs to constantly apply sunscreen on her daughter due to her sensitive skin. Pictured: Zerina, left, with Nelson in summer 2018

Zerina bruises very easily and needs to take medication that clots her blood if she gets a scrape. Nelson also needs to constantly apply sunscreen on her daughter due to her sensitive skin. Pictured: Zerina, left, with Nelson in summer 2018

Doctors told Nelson that Zerina has a form of HPS that will cause her to develop a lung disease called pulmonary fibrosis, which is when lung tissue becomes damaged and scarred. Pictured: Zerina at age one

Without a lung transplant, sufferers could die in their thirties. Pictured: Zerina in winter 2018

Doctors told Nelson that Zerina (left and right) has a form of HPS

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