24 Aug Mom Is Desperate To Make Memories For Daughter Who Is Likely To Die In A Year

The lottery of life may be a miracle in itself, but not everyone can win the jackpot. For some people, life can be battle from day one.

This determined mom is desperately trying to make a lifetime of memories for her daughter who has an ultra-rare one-in-a-million condition that will eventually kill her. 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.

Willow’s mom, Katie Hanson, 23, from Seattle, USA, says that her daughter was her “savior”, as it was only discovered that she had cervical cancer when doctors performed pregnancy scans on her. At the time of the discovery, doctors recommended that Katie get an abortion in order to seek treatment, but Katie continued and had three inches of cancerous cervix removed after she gave birth to Willow.

Now she is cancer free and credits Willow as being the reason she survived the ordeal.

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 learnt 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 i-cell disease.”

Now, Katie is on a mission to ensure her daughter lives her potentially short life to the absolute full.

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