Paula Phillips and daughter Georgia who has spent all her life fighting life-threatening health problems.
Paula Phillips and daughter Georgia who has spent all her life fighting life-threatening health problems. Contributed

Georgia's not alone in her health battles

AS A regular foster carer for Smart Pups Assistance Dogs, I rarely get the chance to meet the families who have actually applied for a dog.

But recently I was fortunate to come across an amazing lady while she was volunteering at the new Smart Pups Charity Shop. Her story touched me deeply so I wanted to take this opportunity to share it with you, the community and maybe even the country.

It's long, and quite detailed, but please bear with me as I really feel it needs telling.

It is the story of a strong, intelligent woman called Paula and her incredible daughter Georgia Mae.

 

Georgia's Sunshine Coast grandparents, John and June, play a major role in her life.
Georgia's Sunshine Coast grandparents, John and June, play a major role in her life. Contributed

Georgia was born on December 14, 2011, after a relatively uneventful pregnancy.

Looking back, there had been some concerns about lack of foetal movement as early as 20 weeks and Paula had some instinctive niggling concerns, but as a first time mum she was happy to trust in the care of the experts.

All this changed on the eventful day when Georgia was born. She was not breathing, had no muscle tone and was given two hours to live.

After a helicopter ride to Brisbane, little Georgia was placed on an ECMO machine - basically the same machine used during heart bypass surgery.

There can be no doubt this action kept Georgia alive, but it required serious intervention on such a tiny body and heavy drug dosages to keep Georgia paralysed throughout treatment.

 

Georgia suffers from profound hypotonia - more commonly known as
Georgia suffers from profound hypotonia - more commonly known as "floppy baby syndrome”. Contributed

She battled for 10 days, showing no movement at all except in her eyes, until she had stabilised sufficiently to come off the machine.

But the worry was far from over for Paula. After two long months in hospital, Georgia was finally allowed home but she needed full-time oxygen and was fed via a nasal gastric (NG) tube.

Georgia had profound hypotonia - more commonly known as "floppy baby syndrome" due to a severe lack of muscle tone - and doctors suggested she would most likely spend her limited life as a "beanbag baby".

Added to this, Georgia also suffered from severe Gerd/Gord and reflux aspiration, which meant she would throw up 20 times a day or more, with a high risk that she would aspirate on the vomit as her lack of muscle tone stopped any chance of her body coping with this on its own.

Doctors recommended that Georgia was isolated from the public for the first 12 months of her life to ensure she didn't catch any bug at all as it would almost certainly be life-threatening, so Paula basically lived in a bedroom with an ensuite bathroom and never left her baby's side for a whole year.

 

Georgia suffers from profound hypotonia â€
Georgia suffers from profound hypotonia â€" more commonly known as “floppy baby syndrome. Contributed

Naturally this put an enormous strain on Paula's marriage and she and her husband separated.

Thankfully she was able to rely on the support of her amazing parents, June and John. Although at the time of the birth Paula lived down near Brisbane and June and John live up here on the Coast, they were tireless in their support of their daughter and baby granddaughter.

Three years ago Paula moved up to Noosa with Georgia to be closer to her family for support.

After such a damning prognosis at birth it's good to know there have been significant successes along the way, due to Paula's total, 24-hour-a-day dedication to her daughter.

The things most parents take for granted were major milestones for Georgia. For example, it was at least six months before she could overcome gravity and raise her leg in the air.

Turning her head, making her first sound and eventually even managing a few steps - these were truly momentous moments for Paula and a testimony to the fact that she simply never gave up.

As Georgia's condition stabilised, Paula determined that if her daughter had any chance of anything approaching a "normal" life at some point in the future, then Georgia needed to be taken off the NG feeding tube.

There was not a single specialist within Queensland who would support this move but Paula persevered. Her main concern arose from the fact that patients fed via an NG tube never actually experience the sensation of being hungry, nor do they develop chewing and swallowing skills.

 

Georgia suffers from profound hypotonia, commonly known as
Georgia suffers from profound hypotonia, commonly known as "floppy baby syndrome.. Contributed

Georgia was taking all her food via the NG tube as a specially blended diet, plus all her water and medication - but at every meal it took two people to manually deliver the food via a syringe to Georgia.

"Feeding" Georgia five small meals a day often took up to an hour each meal, followed by the constant supervision to ensure there was no reflux, aspiration or tube blockage.

After endless hours of research, Paula's sister found a specialist in Germany - a clinical developmental psychologist who was willing to take on the complex case and work with the family to wean Georgia off her NG tube and encourage independent chewing and swallowing.

But the family was faced with an enormous bill to bring the doctor over here and with no clinical diagnosis they received no government grants or assistance.

June and John, together with Paula's sister, rallied around and made fundraising their focus. Thanks to the support of family, friends and local businesses, the funds were raised and the specialist was brought over two years ago.

It wasn't a simple process and for the initial six months the NG tube was left in place while Georgia learned to chew and swallow.

Finally, 18 months ago, she was tube-free.  

Almost everything in Paula's house has a purpose.

 

 

Georgia suffers from profound hypotonia - more commonly known as
Georgia suffers from profound hypotonia - more commonly known as "floppy baby syndrome”. Contributed

A large blow-up weighted toy Minion encourages Georgia to improve her core muscles as she gently wrestles with him.

Sylvanian Family toys encourage fine motor skills and improved dexterity and a small above-ground pool is vital for physiotherapy.

Georgia can now hold a pencil but lacks the muscle strength to effectively apply the pencil to paper, so she will shortly require a laptop in order to keep up with the class as it is hoped that she will be able to use a keyboard or talk to type technology.

Earlier this year, after genetic analysis, specialists finally came up with a diagnosis for Georgia - Congenital Myasthenic Syndrome. It is so rare it affects as few as one in 500,000 people.

It is basically a chronic muscle weakness throughout the body that is actually made worse by exertion. So, ironically, the more Georgia attempts to do physically, the more she puts herself at risk.

Even a giggling fit can bring on severe reflux and aspiration but with no muscle tone in her diaphragm she can't cough or clear the resulting blockage. When this happens Paula has to quickly place her daughter on the floor on her side and pat her back - sometimes for hours on end.

But the last thing Paula would want is for anyone to feel sorry for her. She is incredibly intelligent; someone who used to thrive in high stress situations and both fiercely proud and protective of her daughter.

She has an Honours Degree in Science and is a former policewoman but it's fair to say she is exhausted and more than a little frustrated at the lack of support she receives outside of her direct family.

 

Georgia suffers from profound hypotonia - more commonly known as
Georgia suffers from profound hypotonia - more commonly known as "floppy baby syndrome”. Contributed

As Georgia's condition is so rare there is zero government funding. Initiatives such as Better Start only provide financial support for wider known conditions such as Cerebral Palsy, Down Syndrome, hearing and vision impairment to name just a few.

Whilst Georgia has battled against all the odds to improve to the point where she can go to school part-time, she has a very long road ahead of her and will require constant care for the foreseeable future.

For example her temperature can rise quickly and significantly due to over-excitement, over-exhaustion, illness or purely due to the weather.

She can also spontaneously stop breathing and turn blue. This is not because her lungs don't work so oxygen doesn't actually assist her, but her muscles that aid in breathing - her diaphragm and intercostal muscles - just stop working.

Again, this can occur from over-excitement, exhaustion or a temperature from a fever.

If she falls, she goes down "like a tree" as she has no muscle tone to break her fall. And due to the concave nature of Georgia's sternum, when her heart beats too strongly it literally bounces against her sternum, which can be both painfully debilitating and quite frightening for this plucky little girl.

So it's hardly surprisingly that she can be prone to extreme anxiety outside the home.

And while it might seem a long way away, puberty will create a host of new problems.

But in her determined way Paula can't worry too much about that right now as she is concentrating on "today and tomorrow" and the best ways to keep Georgia calm, emotionally supported and as physically well as possible.

Paula has just been approved for a Smart Pup, believing that the calming nature of a therapy dog will have countless benefits for her daughter and may even hopefully be trained to recognise the onset of Georgia's life-threatening symptoms that can arise almost without warning.

Smart Pups can also provide tailored mobility assistance which would be invaluable for Georgia to gain some independence, in helping her to get up and down off the ground, dress herself and pick things up.

 

But to receive a Smart Pup, Paula needs to fundraise $25,000, as this organisation also receives no government funding.

Paula's care for Georgia is pretty much 24 hours a day, seven days a week, leaving her little time or energy to take on fundraising as well, so that is where I want to help.

Even during the few hours that Georgia is well enough to go to school, Paula uses the time not for herself but to volunteer at the Smart Pups charity shop.

Her amazing mum June plays a part in the charity shop as well, mending donated clothes for resale and turning denim and other fabrics into bags and hold-alls.

To complete the family affair, dad John helps out with large item deliveries and pick-ups.

This is truly a family with a heart of gold and endless spirit, determined to overcome all the odds to help little Georgia.

To give their fundraising a boost I have set up a GoFundMe page for Georgia and hope I can simply get as much publicity as possible for them in order to raise the funds for Georgia's Smart Pup.

Having fostered for Smart Pups several years now I have seen first-hand the amazing ways these beautiful dogs can bring joy to the lives of families with children with special needs and I would so love this to be the case for Paula and her precious daughter.

It's hard to imagine more worthy recipients.

The link is https://www.gofundme.com/smart-pup-for-georgia.

More information on Smart Pups Assistance Dogs for Children with Special Needs can be found on their website www.smartpups.org.au.



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