Life is a precious gem, a miracle like no other! But is it a smooth ride all the way for everyone? Definitely not! Unfortunately, for some people, life can be a constant struggle from the day they are born.

Let me walk you through the amazing lives of Katie and Willow Rae Potter. It might make you realize how blessed you are and how well you have lived and probably wonder what you would have done if you were to be in a similar situation as Katie.

Twenty-three-year-old Katie Hanson, from Seattle, USA is a mother faced with a challenge of dealing with a child suffering from an ultra-rare condition that might kill her in a year. Instead of getting discouraged and weep, Katie has vowed to enjoy every minute of her daughter’s life and make as many lifetime memories as she can that will outlive her child.

Katie’s daughter Willow Rae Porter, who is only 22-months-old, has inclusive-cell (i-cell) disease, which affects her heart, lungs, digestion, joints and could tragically lead to her premature death by the age of three. Inclusion cell disease also referred to as mucolipidosis II I-cell is a rare metabolic disorder characterized by coarse facial features, skeletal abnormalities, mental retardation, and delayed growth which usually result in short stature {dwarfism}.
Katie would have suffered devastating effects of cervical cancer or probably died from cervical cancer if it had not been for her pregnancy. Why?

Well, because it was only discovered after doctors performed pregnancy scans on her. At the time of her diagnosis doctors advised her to have an abortion, but she would not hear of it. In her view there is no way she was going to sacrifice her unborn baby’s life over hers, reasoning that if she wasn’t pregnant she would never have known she had cervical cancer. Though it was an unwise decision which cost her three inches of her cervix being removed after giving birth to her daughter Willow, Katie survived the ordeal. She is now cancer free and owes it all to her little girl, Willow.

Katie is now determined to make as many memories as she can for her little girl, who is so sick that even a common cold could potentially kill her. Katie, who is now a full-time carer, says that Willow has defied the odds already, having learned to say “Momma” despite many sufferers remaining mute.

“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 “A normal case of the sniffles can mean a hospital visit and a life-support machine for Willow if her lung was to collapse.

“Our main priority is to keep her comfortable and happy, despite all the problems she is facing she is a very happy child.”

“Most children with i-cell, learn simple word sentences, but some are non-verbal and only babble, however, Willow just learned to say ‘momma’ and ‘yeah’ when she’s excited – she constantly amazes me. Now we’re trying to make as many memories with her as we possibly can, as the memories someday will be all we will have left. My main focus is taking things one day at a time and I’m thankful for each and every second we get with her, we’re living a life without regrets and not taking things for granted.”

Willow’s illness was first identified by doctors when she was struggling to breathe and eventually stopped eating food at the age of three-months-old. Due to the severity of her condition, the girl only spent 12 days outside of hospital last year, as doctors were struggling to deal with and diagnose the root of her problems.

Her mother has spoken about the experience.
“When she was on a breathing tube and life support at eight-months-old, doctors told me the last thing they could do is send her for a complete and total DNA genome sequencing. The test, which decoded every single fraction of her genetic makeup, typically takes six months, but for Willow, within two days they had identified the i-cell disease.”

Katie is now on a mission to ensure her daughter lives to enjoy the remaining days of her life her to the absolute full.

 The ultra-rare condition that Willow suffers from is called mucolipidosis II, and it gives sufferers a variety of different problems. 

Willow’s respiratory system is her most compromised area, with her already suffering eight bouts of pneumonia, a collapsed lung and a host of different respiratory infections.

“The most obvious thing it causes is an extremely rare form of dwarfism, which halts all skeletal growth,” Said Katie.

Willow’s slow growth finally stopped at around 18 months of age, caused by I-Cell, she only weighs 17 lbs (1st 3) and is 27 inches in length, making her the size of your average 6-7 months old. Growth for I-Cell children typically halts around the second year.

“The curvature of her spine is front to back rather than side to side, there are a lot of medical conditions all caused by i-cell, every single segment of her body is affected differently.” The cause of I-Cell is the Lysosomes of the body being unable to break down fatty substances and specific carbohydrates due to the misdirection of enzymes that signal the breakdown process.

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For Willow, this means that there is a build up on areas of soft tissue, joints, cartilage and her bone structure. Katie explained;
 
“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.
 What you can’t see is the build-up is also happening with in the joints of her hands, wrist, arms, and knees causing stiffness and discomfort as well as enlargement of both her liver and spleen.”

Despite her condition, Katie is focused on keeping Willow very happy. However, due to a lack of funding, there is not much research that has been done in order to help sufferers.

“For now, it’s about keeping her alive and comfortable. There’s no plan set out for i-cell kids other than making the most of the time you have with them. Despite this, children with i-cell are angels on Earth, my little girl puts up with so much and doesn’t bat an eyelid.

 Willow is adorable and a social butterfly, she loves watching people, talking to people and always has a smile ready for anybody.”

What an inspirational and heartwarming story!
We pray that Willow will get to live for a longer time.

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