This Baby Girl Is Sadly Expected To Die In A Year

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A toddler who was born with a one-in-a-million condition is expected to die in a year.

Willow Rae Porter, who is just 22 months old has inclusive-cell (i-cell) disease, which affects her breathing, heart, digestion, joints and could lead to her premature death by the time she is 3 years old.

Only 72 cases of the condition have been reported in the whole world.

Despite her medical problems, Mom Katie Hanson, from Seattle has described her daughter as her ‘saviour’ as doctors discovered she had cervical cancer during her pregnancy scans.

At the time, doctors advised the Mom-to-be to have an abortion so she could seek treatment, however, Katie carried to full-term and after giving birth had 3 inches of cancerous cervix removed.

The Mom is now cancer free and thankful to her little girl, who she maintains is happy despite being very sick, with even a common cold capable of killing her.

Katie now wants to make as many memories as possible with Willow Rae, who only learned to say ‘Momma’ 4-months-ago against the odds, as some sufferers stay mute.

Katie, cares for Willow full-time, said: ‘Willow was my saving grace, if I wasn’t pregnant I would never have known I was developing cervical cancer.

I was encouraged to terminate the pregnancy, but Willow saved my life I wasn’t going to value myself over her, so after giving birth I had three inches of my cervix removed. When we got Willow’s diagnosis, it was crushing, in an instant our whole world was turned upside down as we prepared for this life limiting diagnosis. The best-case scenario is her living to ten years old, the average is between three and five and often less, her diagnosis is less than two in a million – currently there are 72 confirmed cases in the world. Among her many problems, she has heart failure, respiratory failure, kidney problems, neurological and developmental issues, severe hip dysplasia and more. She’s also very immunocompromised, what kills children with this condition is cardiac arrest, respiratory failure or just the common cold.”

The cause of I-Cell disease is the Lysosomes of the body’s cells being unable to break down certain fatty substances as well as specific complex carbohydrates due to the misdirection of enzymes that signal the breakdown process.

For Willow, it means the build up within her cells accumulates to areas of soft tissue, joints, cartilage, and bone structure.

Katie said: “The lysosomes are supposed to be breaking down the bad stuff in her body, but because the enzymes are misdirected and hyperactive the build-up in her tissue is happening all over her body. Her gums are the area where you can actively see the build-up happening as they are very thick and rigid causing a constant phase of teething as they continue to grow.”

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