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Friday, 29 May 2015

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Prudhoe: Toddler Macie misses out on taste of childhood

WHETHER enjoying the sugary delights of a paper packet of penny sweets, enduring the wilted horrors of school dinners or savouring every last lick of a ice cream, many memories of childhood involve food.

But one Prudhoe toddler who suffers from a rare condition, will never know the taste of childhood.

Fourteen-month-old Macie McCrorie lives with a gastric condition that means she is unable to eat or drink.

The toddler has intestinal pseudo obstruction, caused by visceral neuropathy – a condition that means the nerves and muscles in her bowels, kidneys and bladder do not work.

Macie is fed via a central line into her heart and is hooked up to the bags for 18 hours every day.

Unable even to tolerate her own saliva, Macie is also attached to a percutaneous endoscopic gastrosomy (PEG) bag to collect the fluid.

Born four weeks prematurely on April 9, 2013, Macie was unwell from an early age vomiting almost everything she was fed.

At six weeks old she was referred to Newcastle’s Royal Victoria Infirmary to undergo tests.

After attempts to feed Macie via tubes in her nose, stomach and bowel failed, the paediatric gastroenterology team decided that a central line into her heart was the only way to get vital nutrients into her tiny body.

And following further tests at London’s Great Ormond Street Hospital a diagnosis of intestinal pseudo obstruction was confirmed.

Her mum, Cheryl Robson (26) said: “It has been really hard to see Macie in pain and not know what was wrong.

“When we got the diagnosis my first reaction was what can we do to fix it.

“Then they told us it was something she would have for life, because there’s not anything they can do for it – there’s no cure.

“It is horrible; you just never think that it would happen to you. Then you realise you just have to deal with it and learn what to do to bring her home and keep her safe.”

After Macie was fitted with the PEG bag, both Cheryl and Macie’s father, David McCrorie, were given intensive training in how to feed and care for her.

But just weeks after leaving hospital, Macie contracted a urine infection which landed her back in a hospital bed.

She then fell ill with colitis and began to bleed from her bottom, but due to her underlying condition the usual medication was ineffective.

Deemed well enough to attend her cousin’s birthday tea, Macie seemed her usual happy self, but just minutes after returning to hospital the volume of blood loss caused her to go into cardiac arrest.

Medics resuscitated her, and after receiving a blood transfusion she underwent emergency surgery to remove her large intestine and prevent the colitis from returning.

Further tests revealed that the nerves in her bladder and kidneys also do not work and Macie is now catheterised every three hours and is given antibiotics twice a week.

Cheryl said; “It will be like this for her whole life unless a cure is found.

“She can never eat or drink anything, which is hard because she’s got to the age now where she wants to try everything.

“And she can’t run around and play like any other little girl.

“But she doesn’t let anything faze her. She’s just so happy all the time; she just smiles at everything.

“The doctors warned us that she might never crawl and she’s almost walking now. I’m so proud of how brave she is and how far she has come.”

Cheryl and her family are now fund-raising to raise money and awareness for intestinal pseudo obstruction.

They have already raised over £3,500 through a charity night and have many future activities planned.

The money raised will go to improving facilities at the Great North Children’s Hospital at the RVI, the paediatric gastroenterology team at the RVI and towards further research into the condition.

To get involved with the fund-raising, contact maciesstory.vpweb.co.uk/contact