Hope For Harper
Donation protected
The Loadsman family are not your average family. For one, theirs 7 of them! There's Dad Shane, the quiet hard working construction worker, Mum Jana, the ever charging uni student who despite juggling a million things at once with not only the demands of 5 kids, 3 of whom have special needs, but who also manages to keep chipping away at her OT degree... and gets into honours.
There's brother Kynan, 14, the A grade math whizz, who if not busy playing soccer, is skateboarding or surfing his free time away. Miss Chloe is next, she's 12, and despite inheriting the chromosome abnormally for Alagille syndrome, is always singing or dancing her way around the house. Sister Bella, 10, comes with her own challenges. Bella inherited a "mirror opposite" chromosome abnormality to sisters Chloe and Harper.
Which has unexpectedly resulted in her being diagnosed with epilepsy at just 11 months of age. On top of all of this, little Bell also has added challenges which has impacted on her growth and development. She is really small for her age, but does however have the personality of a giant! Little Mimi 8, was the baby, until at age 6, was outdone by the littlest Loadsman Miss Harper.
Everyone was overjoyed when Mum Jana and Dad Shane announced Miss Harpers impending arrival. However things didn't quite go to plan. Miss Harper was born with the same chromosome abnormality as sister Chloe. Harper has Alagille Syndrome, and in the days preceding Miss Harpers birth, Shane and Jana had to face the realisation that Miss Harper was like no other. It would trump every single challenge that they had ever faced yet...
Because not only did Miss Harper fail to grow from her tiny 4p 14oz birth weight, but she also started to become increasingly yellow. And her poos were WHITE. A routine trip to see the gastroenterologists at LCCH in Brisbane, quickly turned into surgical reviews, the talk of the term Biliary Atresia. A week later a cholangiogram was arranged, and a Kasai followed. Miss Harper was 88 days old, barely 3kgs, and had now rocked a scar from one side of her belly to the next.
In the days following the Kasai, Shane and Jana quickly grew to realise the Kasai had failed. And Miss Harper was sick. REALLY REALLY SICK. Doctors were extremely worried about the high risk that should they perform an immediate transplant Miss Harper would not survive. So they made the decision to wait. Harps spent 16 consecutive weeks in hospital, completely dependent on IV nutrition, otherwise known as TPN and fats (Lipids) to get her big enough for transplant.
She was listed on July 27th, 2015. This required the family to move to Brisbane on a semi-permanent basis. But limitations in Ronald McDonald House capacity, determined that not EVERYONE could move up with her. Money was a beyond tight, and Dad Shane had to return to the mines to make sure they had enough money to not only pay for the mortgage and bills back home, but also get enough money together to get the bond to rent out a unit full time so that everyone could be living in Brisbane together.
As Jana was ADAMANT that they family would not be split apart. The family moved to Brisbane In August 2015. The series of events that followed were nothing short of a roller coaster ride… Just weeks after moving in Dad Shane was made redundant, Jana's beautiful Mum Sue lost her short battle with Brain Cancer, and Harper started to GROW and put on so much weight, that the liver team decided to delist her and let her go "home home"!!!
So on January 9, 2016, the family FINALLY moved home. Jana being the over achiever that she is, went straight back to uni, Dad Shane consequently oddly enough started working in FT in Brisbane, and the kids got a whole year back at "home school".
They took the time to take all the kids on a trip of a lifetime to Port Douglas, and life was beginning to become normal again, despite Harper requiring 22 hour a day feeds through her GJ peg in her tummy, with her special liver formula and the page full of medicines that she would have to have administered each and every day.
This is not to mention 8 weekly hospital sleep overs, fortnightly OT, speech and physiology appointments, and daily projectile vomiting from Harps, who can't stomach any more than 10mls of fluid at any one time. This family just continued to make the most of EVERY moment.
But fast forward to 2017, and Harps was becoming itchier, the bile salts in her skin make her want to rip her skin off, and would wake up every day with more bleeding sores where she had scratched her skin so badly through the night. She also started having absent siezures, a result of encephalopathy, a toxic effect to the brain from the effects of her liver disease.
Harper needed a new liver. So a routine trip to Brisbane on March 7th 2017, it was agreed. Harper would be listed in just a few weeks. But first she needed lots of tests to get her ready for transplant. This requires Bloods from her Portacath, an implanted device in her chest wall.
Harps also required an EEG, MRI, CT ultrasounds and more and more blood tests. Poor little Harps has suffered SO badly from the historical trauma of her life as a hospital baby, that has significantly delayed not only her development, but also her capacity to allow people to touch her. She associates touch with pain. And at 2 years and 4 months, Harps does not walk, does not eat, but wants to be like her big brother and sisters. She LOVES the beach, Pepper pig and soft cuddly toys. She LOVES MUSIC, swinging on swings and playing on the trampoline.
And so now, today, The Loadsman family are now back to where it all began. On May 28, they had officially, but temporarily, moved the family back to Brisbane, to get ready for Harpers July 4, 2017 reactivation on the transplant waiting list. However, this "temporary" stay is still expected to be the best part of a 6 months. Which has required them to pay for expensive short term accommodation for 7 in Brisbane, whilst also still managinging to pay for the mortgage, bills and car repayments at home( and everything in between). And as Shane and Jana know all too well, Shane just won't have the capacity to work this entire time, because their baby, Baby Harper is going to TRANSPLANT.
And as anyone who knows these two amazing parents, know, they would NEVER be the ones to ask for help. Which is why we need YOU. Jana and Shane have been advised that once reactivated on 'The List', a liver may be available in just days, weeks at most. Putting a HEAVY load on everyone, with one main question... How are they supposed to survive this journey emotionally, physically and especially financially, if they DONT ask for help???
Jana is on a CONSTANT roller coast of anxiety and panic attacks. Despite the public face. Jana and Shane have done an OUTSTANDING job on their 5 beautiful children, who have come to take their constant moves back and forward between their home home and Brisbane in their stride, because Jana saves face and makes the BEST out of every situation. But behind the scenes she is falling apart. So, this is where you guys come to help. THESE GUYS NEED US. They need us to band together to help them just focus on getting their GORGEOUS baby girl back to health following her transplant. And to leave the rest up to us!!! Please SHARE, Please PRAY and PLEASE DONATE!!!
To follow little Hraper as she goes to transplant, you can "like" her page www.facebook.com/thelittlestloadsman
There's brother Kynan, 14, the A grade math whizz, who if not busy playing soccer, is skateboarding or surfing his free time away. Miss Chloe is next, she's 12, and despite inheriting the chromosome abnormally for Alagille syndrome, is always singing or dancing her way around the house. Sister Bella, 10, comes with her own challenges. Bella inherited a "mirror opposite" chromosome abnormality to sisters Chloe and Harper.
Which has unexpectedly resulted in her being diagnosed with epilepsy at just 11 months of age. On top of all of this, little Bell also has added challenges which has impacted on her growth and development. She is really small for her age, but does however have the personality of a giant! Little Mimi 8, was the baby, until at age 6, was outdone by the littlest Loadsman Miss Harper.
Everyone was overjoyed when Mum Jana and Dad Shane announced Miss Harpers impending arrival. However things didn't quite go to plan. Miss Harper was born with the same chromosome abnormality as sister Chloe. Harper has Alagille Syndrome, and in the days preceding Miss Harpers birth, Shane and Jana had to face the realisation that Miss Harper was like no other. It would trump every single challenge that they had ever faced yet...
Because not only did Miss Harper fail to grow from her tiny 4p 14oz birth weight, but she also started to become increasingly yellow. And her poos were WHITE. A routine trip to see the gastroenterologists at LCCH in Brisbane, quickly turned into surgical reviews, the talk of the term Biliary Atresia. A week later a cholangiogram was arranged, and a Kasai followed. Miss Harper was 88 days old, barely 3kgs, and had now rocked a scar from one side of her belly to the next.
In the days following the Kasai, Shane and Jana quickly grew to realise the Kasai had failed. And Miss Harper was sick. REALLY REALLY SICK. Doctors were extremely worried about the high risk that should they perform an immediate transplant Miss Harper would not survive. So they made the decision to wait. Harps spent 16 consecutive weeks in hospital, completely dependent on IV nutrition, otherwise known as TPN and fats (Lipids) to get her big enough for transplant.
She was listed on July 27th, 2015. This required the family to move to Brisbane on a semi-permanent basis. But limitations in Ronald McDonald House capacity, determined that not EVERYONE could move up with her. Money was a beyond tight, and Dad Shane had to return to the mines to make sure they had enough money to not only pay for the mortgage and bills back home, but also get enough money together to get the bond to rent out a unit full time so that everyone could be living in Brisbane together.
As Jana was ADAMANT that they family would not be split apart. The family moved to Brisbane In August 2015. The series of events that followed were nothing short of a roller coaster ride… Just weeks after moving in Dad Shane was made redundant, Jana's beautiful Mum Sue lost her short battle with Brain Cancer, and Harper started to GROW and put on so much weight, that the liver team decided to delist her and let her go "home home"!!!
So on January 9, 2016, the family FINALLY moved home. Jana being the over achiever that she is, went straight back to uni, Dad Shane consequently oddly enough started working in FT in Brisbane, and the kids got a whole year back at "home school".
They took the time to take all the kids on a trip of a lifetime to Port Douglas, and life was beginning to become normal again, despite Harper requiring 22 hour a day feeds through her GJ peg in her tummy, with her special liver formula and the page full of medicines that she would have to have administered each and every day.
This is not to mention 8 weekly hospital sleep overs, fortnightly OT, speech and physiology appointments, and daily projectile vomiting from Harps, who can't stomach any more than 10mls of fluid at any one time. This family just continued to make the most of EVERY moment.
But fast forward to 2017, and Harps was becoming itchier, the bile salts in her skin make her want to rip her skin off, and would wake up every day with more bleeding sores where she had scratched her skin so badly through the night. She also started having absent siezures, a result of encephalopathy, a toxic effect to the brain from the effects of her liver disease.
Harper needed a new liver. So a routine trip to Brisbane on March 7th 2017, it was agreed. Harper would be listed in just a few weeks. But first she needed lots of tests to get her ready for transplant. This requires Bloods from her Portacath, an implanted device in her chest wall.
Harps also required an EEG, MRI, CT ultrasounds and more and more blood tests. Poor little Harps has suffered SO badly from the historical trauma of her life as a hospital baby, that has significantly delayed not only her development, but also her capacity to allow people to touch her. She associates touch with pain. And at 2 years and 4 months, Harps does not walk, does not eat, but wants to be like her big brother and sisters. She LOVES the beach, Pepper pig and soft cuddly toys. She LOVES MUSIC, swinging on swings and playing on the trampoline.
And so now, today, The Loadsman family are now back to where it all began. On May 28, they had officially, but temporarily, moved the family back to Brisbane, to get ready for Harpers July 4, 2017 reactivation on the transplant waiting list. However, this "temporary" stay is still expected to be the best part of a 6 months. Which has required them to pay for expensive short term accommodation for 7 in Brisbane, whilst also still managinging to pay for the mortgage, bills and car repayments at home( and everything in between). And as Shane and Jana know all too well, Shane just won't have the capacity to work this entire time, because their baby, Baby Harper is going to TRANSPLANT.
And as anyone who knows these two amazing parents, know, they would NEVER be the ones to ask for help. Which is why we need YOU. Jana and Shane have been advised that once reactivated on 'The List', a liver may be available in just days, weeks at most. Putting a HEAVY load on everyone, with one main question... How are they supposed to survive this journey emotionally, physically and especially financially, if they DONT ask for help???
Jana is on a CONSTANT roller coast of anxiety and panic attacks. Despite the public face. Jana and Shane have done an OUTSTANDING job on their 5 beautiful children, who have come to take their constant moves back and forward between their home home and Brisbane in their stride, because Jana saves face and makes the BEST out of every situation. But behind the scenes she is falling apart. So, this is where you guys come to help. THESE GUYS NEED US. They need us to band together to help them just focus on getting their GORGEOUS baby girl back to health following her transplant. And to leave the rest up to us!!! Please SHARE, Please PRAY and PLEASE DONATE!!!
To follow little Hraper as she goes to transplant, you can "like" her page www.facebook.com/thelittlestloadsman
Organizer
Jana-Jade Loadsman
Organizer
Petrie Terrace QLD
