'Life can change in the blink of an eye' - mum shares story of rare baby condition

Katie was a young mum of 1 when, aged 21, she found herself pregnant once more.

Then, during a routine pregnancy scan, it was discovered that Katie actually had cervical cancer. Doctors advised her to terminate her pregnancy - but Katie refused.

'In my heart I was doing what was right'

"The thought of termination never crossed my mind," explains Katie. "When my doctor informed me that to be able to do a biopsy to see how [the cancer] progression was taking place I would need to end my pregnancy I simply said no.

"When I was told there would be no way of knowing how bad it was with me still pregnant, I asked if my cancer could pose any threats to my baby and I was told no that Willow was fine and cancer could not affect an unborn child - that it was only for my safety.

"I said no, that I would not let the ego of my own life take that of my unborn child. Willow was well monitored and developed perfectly as any other child would in a completely uneventful pregnancy.

"Yes there were moments of anxiety over not knowing the exact details of my cancer but in my heart I was doing what was right and I will always stand by that."

Katie continued her pregnancy and as soon as Willow was born, Katie had an operation to remove the cancerous cells. The treatment worked and Katie's cancer was in remission. But there was terrible news to come.

When Willow reached the age of 9 months, doctors discovered she had a rare condition called I-cell. It's an inherited metabolic disorder that affects facial features and facilitates skeletal abnormalities, and only 72 cases have been recorded in the world,

Children born with I-cell have, at best, 10 years of life ahead of them, but the reality is they are more likely to reach just 3 to 5 years.

'I was shell-shocked and alone'

Katie found herself alone in the hospital after the diagnosis, and took it into her own hands to find out exactly what I-cell meant for her baby.

"Like anyone with a name and no other information I was left to do my own research. Within 10 minutes of looking up her condition I found her prognosis was at best 10 years but an average of 3-5 years.

"Within 20 minutes I had found almost all the documented information for Willow's diagnosis, because there has been so little research.

"Heartbreaking and devastated is an understatement - suddenly any plans and dreams for a future was out the window. The life I knew shattered.

"I knew we would not ever be able to go back home to Montana and would now have to move to Seattle in Washington to keep Willow closer to the high level care that Montana dose not have.

"I felt shell-shocked and alone." ?

Katie - a single mum - made the move away from her family to live in Washington. While Willow qualifies for home care 8 hours a day, 5 days a week, due to a lack of nurses, she currently doesn't get it. So Katie is sole caregiver to both Willow and her little boy, Zayden, aged 4.

So, we asked Katie, what does a regular day look like in her house?

'Though a lot of our day is far from the norm we are still like any other family'

"Our average day for me starts at 6am for Willow's first medication. She loves her beauty rest and will most days sleep in from 9am to 11am unless we have an early appointment, but I try to keep our appointments till after 12 so she is able to get her rest and wake up happily on her own terms (she does not enjoy being woken up).

"Her next medications are at 9am then 3pm and again at 9pm. In between her her medications there is also filling her feeding pump bag every 4 hours around the clock, as Willow is on a 24/7 continuous tube feeding as she has very slow motility of her digestion and aspirates when eating orally.

"She has to get a nebuliser treatment and airway clearance suctioning every morning after waking up and every night before bed - an amazing improvement from when she first came home, and was requiring it every 4 hours.

As she has grown she has gained more stability in her airway.

"Summer days we try to spend as much time outside and doing fun things as we can in between our appointments. We usually have several a week.

"During the cold months and viral season we limit where we go to keep Willow at low risk of getting sick.

"Though a lot of our day is far from the norm we are still like any other family, we still play and be silly together, we still make messes with crafts, and my son and Willow still have your typical big brother-little sister relationship.

"They love to play and read books together, Willow still likes to take toys, and of course they still love to annoy each other and get on each others nerves!

"The dishes still need doing, the laundry still needs to be washed. We do all that a 'normal' family does with the added task of Willow's care and appointments."

So, for Katie, life is pretty much all about her kids - though she does get to do play dates with other mums from Willow's therapy group. And all in all, she says - apart from the I-cell diagnosis - she wouldn't change a thing.

'Willow is a blessing through and through'

"I would never change my decisions or what I have gone though. Willow is a blessing through and through every day. She gives me a reason to smile.

"I will always stand by her. If I had three magical wishes I would only need one - and it is the one wish each family affected by I-cell has - and that is for a cure or even just available treatments: that is all any of us would change.

"Our children have the biggest, happiest personalities and are truly angels on earth. They are born knowing the meaning of unconditional love for life and everyone around them and that never changes.

"The only thing I would change is the prognosis of I-cell." ?

With all she's been through, Katie still finds happiness in the little everyday things. At the moment, she's helping Willow to learn sign language. Willow can say a few words, such as momma and bubba (for her brother) and Katie reveals it's in these tiniest moments she finds great joy.

'Each day I put my best foot forward and give my little family all I have'

"[What makes me happy is] seeing the smiles on my kids' faces, seeing them love one each other and that they don't see their sibling relationship different than any other.

"My son loves to tell everyone about his baby sister and to show them 'the sparkle in her eye'". It makes me so happy that my son is so kind and accepting of others who the world sees as different - but all he sees is others like his sister that he loves."

And finally - in a world where mums are shamed over the smallest things, and seemingly insignificant issues become big - we asked Katie what advice she'd give to parents, bearing in mind all the experiences she's had.

'Take the time to appreciate your children's small triumphs as some parents do not get that chance'

"Love your children each and every day, life can change in the blink of an eye and what's here today could be gone tomorrow.

"Take the time to appreciate your children's small triumphs as some parents do not get that chance.

"Take time for extra hugs and kisses, take time for that extra bed time story, tell them you love them and that you are proud of them.

"Because if it all fell apart tomorrow your concern would never be that you loved your child too much: you would give it all for one more moment." ?

Pics: Katie Hanson

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