Willow Rae Porter is a beautiful baby girl with a one-in-a-million condition.
But sadly she is not expected to live till the end of the year.
Willow is now 22 months old and has inclusive-cell (i-cell) disease. The cruel condition affects her breathing, heart, and digestion.
Only 72 cases of the illness have been reported world-wide.
Willow’s mom Katie Hanson, 23, from Seattle in Washington, USA, has described her brave daughter as her ‘saviour.’
When Katie was pregnant with Willow doctors discovered she had cervical cancer.
She was advised to have an abortion so she could seek treatment. But undeterred Katie carried to full-term.
After giving birth to her daughter she had three inches of cancerous cervix removed.
Despite her daughter’s tragic circumstances, Katie is determined to make as many memories as possible with Willow Rae.
Her little girl is already beating odds by learning to say ‘Momma.’ Some sufferers with the condition remain mute.
Katie, who 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.’
‘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 problems first came to light when her mom saw that she would sometimes struggle for breathe. She eventually stopped eating due to food not properly travelling through to her stomach at three-months-old.
Last year, she spent a mere 12 days outside of hospital.
Katie said: ‘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.’
Katie said: ‘There are only two genetic specialists for I-Cell, there is no direct federal funding for I-Cell so funding relies on the families who have been affected, like the Yash Gandhi Foundation.
‘Willow is adorable and a social butterfly, she loves watching people, talking to people and always has a smile ready for anybody.’
The ultra-rare condition, is also known as mucolipidosis II. To donate towards Willow’s care visit her You Caring page.