***BABY LEO NEEDS OUR HELP IN HIS BATTLE ***
LEO IS LOSING HIS LIFE TO LIVER DISEASE HE HAS ONLY MONTHS LEFT TO LIVE, HE NEEDS AN URGENT LIVER TRANSPLANT AND HE NEEDS HIS MUM AND DAD AT HIS SIDE AS HE FIGHTS
FUNDRAISING FOR UNEXPECTED TRANSPLANT, LOSS OF INCOME AND ASSOCIATED COSTS
LEOS JOURNEY WITH LIVER DISEASE:
As a newborn baby, Leo was diagnosed with Extrahepatic Biliary Atresia a rare gastrointestinal disorder in newborns, that destroys the bile ducts causing a bile build up in the liver and permanent cirrhosis of the liver leading eventually to liver failure there is no cure without a lifesaving liver transplant babies don’t usually make it past infancy.
NB: The cause for Biliary Atresia is unknown but what we do know is that this disease is not genetic, it is not something that mum did or did not do during pregnancy, it just happens and it can indeed happen to any baby born to healthy, active parents it is totally random.
So, when the Biliary Atresia bombshell hit I was on paid maternity leave from work and we unexpectedly lost my husband’s income as he dropped everything to be at his seriously sick son’s side, he had no leave entitlements being casual or income protection. I had no idea about the huge and dramatic impact this was about to have on our family not only emotionally but financially it’s HUGE.
“Leo has lived most of his young life in the Lady Cilento Children’s Hospital”
Since Leos diagnosis, we have been hit with all kinds of unexpected additional medical expenses and additional costs associated with the illness when Leo needed to undergo an urgent surgery called Kasai to try and salvage his native liver.
Unfortunately, for Leo, the 8-hour Kasai operation performed in December to try and save his native liver failed, to watch your 9-week-old baby go through major surgery only to find out it wasn’t successful is beyond disheartening & devastating.
What has followed post Kasai is endless blood tests, 10 hospital admissions, ultrasounds, invasive procedures, blood transfusions, Ng tube insertion and a Hickman line operation to try and stabilise his condition….and last week underwent many many tests in his liver work up.
Leo In PICU after the failed Kasai Operation (diagnosed too late we suspect)
My husband has constantly had the dilemma of if he should turn up to work to pay the bills keep a roof over our head, put food on the table, pay our bank loans and keep the utilities on or staying up at the hospital at Leo’s side and support me when I was falling to pieces. We also have a 5-year-old daughter to look after and we don’t have a lot of family support. It was obvious where he needed to be but at the same time, we still had to live.
All our savings had just gone on having a new baby so we were very much caught out.
Go fund me was the only way I could try and help Matt, my husband, to spend as much time with Leo as possible as after all we had been told his life expectancy was and is still limited.
NB: We haven’t been able to access any help from Centrelink or haven’t been able to get our supers released under medical financial hardship grounds.
Our Go Fund Me Campaign to save baby Leo was born and to say we were humbly overwhelmed at the generosity of our friends, family and strangers is an understatement it was beyond compare.
Even though at the moment our Go fund Me total reflects over 20K most of those funds have been drawn down to help us survive. Since the 1st December, our out of pocket expenses have been totalled over $16,000 so most of the go fund me funds have already gone a long way to way to help cover us up until now but have fast depleted and almost GONE. Now we have the TRANSPLANT upon us so soon after Kasai and we just can’t catch our breath.
“I need to keep my family together we would give anything for that to happen”
So far the funds raised have helped to cover the loss of earnings for Matt over the last 4 months, high costs of hospital parking, paid in-house help, babysitters for our other sibling, specialised liver formula for Leo, medications, petrol commuting from home to hospital, associated costs of eating out living away from home (hospital does not provide meals).
Leo has been admitted to hospital 10 times already since his diagnosis spending more time in than he does out on average a week at a time each hospital admission really puts us out.
Leos illness has now reached a critical stage where specialists at LCCH have told us Leo’s health is deteriorating rapidly. Leo is only 6 months old and only has MONTHS left to live he requires 24/7 specialised care, without the new liver, Leo won’t live to see his first birthday.
LEO IS NOW ACTIVE ON THE TRANSPLANT LIST IN QUEENSLAND waiting for his precious second chance at life and for us, this could not come soon enough.
There is going to be further ongoing outpatient appointments, surgeries, tests, treatments and admissions leading up to the transplant which is all very time-consuming.
We must remain on standby 24/7 and alert until a suitable donor liver becomes available and have the work up carried out on our own livers in event Leo becomes too sick to wait for a cadaveric liver which requires one of us being off work for at least 6 months.
“Leos Media Coverage in the Sunday Mail as a community we need to help Leo”
We also need to prove we can financially support ourselves over that 6 month recovery period to even be eligible to be considered for live donation.
There is a donor shortage here in Australia and we just pray that Leo gets a suitable liver on time before he becomes too sick to be transplanted.
Being faced with the very real possibility we could lose our baby boy is every parent’s worst nightmare and incomprehensible unless you’re actually going through it. Losing him altogether would be next level and I hope I never have to go there.
“Without Leo there is no us”
I just want to say how fortunate we are to be covered by such an amazing health care system here in Australia as the cost of the transplant costs Medicare around $150,000 AUD even more if it’s a living related donor. Very grateful I am not having to fundraise for the cost of the operation itself.
Post-transplant Leo will need to remain in Lady Cilento Children’s Hospital for up to 2 months with one of us at his side at all times, after discharge, he will be closely monitored in specialist care for 3 months ensuring post-transplant complications are managed.
Discharge home is under very strict instructions and supervision of the treating team, Leo requires lifelong medical supervision by a specialist liver transplant team. He will be immune suppressed and we won’t be able to expose him much in the first-year post-transplant so will be isolated at home and we won’t be risking putting him in daycare.
This means even though I had planned to return to the workforce after my paid parental maternity leave had finished which is now this is no longer going to be an option for me. Because of Leo’s health, I had to make that decision not to work due to the unpredictable and time-consuming nature of Leo’s medical needs.
Matt has had to take a considerable amount of time off work (months) due not being able to uphold his working commitments due to having to be up at the hospital with Leo (someone needs to be there with him at all times) or helping me out caring for Savannah as we have no family help or support.
This unanticipated change to my family’s financial circumstances is likely to have an ongoing and significant impact on our family finances as we continue to adjust to the cost of caring for Leo until at least a year post-transplant.
Your donations(no amount too small) will help assist us to survive the period over the transplant where recovery is slow and long and difficult times emotionally and financially lie ahead.
“Real Superhero’s live in the hearts of little babies fighting the biggest battles” (Leo is our hero)
And if you ever wonder, what it’s like to be a ‘liver parent’… imagine
Imagine being told your child is seriously ill and has a limited life expectancy
Imagine crying until you can’t cry anymore and feeling physically ill from all the stress
Imagine the anxiety about the unknown’s and wandering the hospital corridors, as if your life was on pause.
Imagine signing a consent form knowing that death is an option (yesterday, I signed the transplant consent with a 1 in 10 chance of death)
Imagine having to hand over your child to surgeons over and over for endless hours and waiting.
Imagine your child covered in wires with a machine breathing for them.
Imagine the terror… and living in constant fear
Imagine the pain of having to leave your baby in the care of strangers and not be able to sleep by their side.
Imagine standing by as your baby’s body is pumped full of medication.
Imagine holding your baby down countless times while someone sticks needles in them while they scream.
Imagine the guilt… being away from your baby and being taken away from your other child and missing them.
Imagine keep being told the percentage chances that your child might survive or leave you.
Imagine not being able to leave the house for fear of infection.
Imagine not being able to make any plans apart from numerous hospital visits.
Imagine being stuck in isolation and not see any of your friends or anything but four walls for days on end.
Imagine perfect strangers passing comment about your son.
And with the emptiness…
Imagine how fragile and precious life feels.
WHAT CAN YOU DO TO HELP US HELP LEO?
SHARE SHARE SHARE – Please just share this on your social Media, linkedin, twitter, Instagram pages or amongst any email contacts or any FB groups you belong to and create awareness of Biliary Atresia and the importance of organ donation… you too can help save a Life.
EDIT: Please if we post our campaign again because of news about the urgent transplant and ask you to share on your pages we are not asking you to donate again just to help our campaign go viral & help shed light on Leo’s fight.
*Consider Registering to become an Organ Donor http://www.donatelife.gov.au/
*Pray for our son to get his liver on time ( the powerful prayer of many )
*Reach out to us and send us a message of hope
*If you have any fundraising ideas let us know
*Donate your time to help us any practical help will be gratefully received.
*Donate money only if you can to our appeal ( no amount is ever too small ) you are buying us precious time with Leo and that is Priceless!
*If you want to follow Leo’s Journey on my blog and know what it is like to be a family living with liver disease please subscribe to my blog for regular updates
Leo just after our world fell apart
Father and son holding on for strength
Spreading the BA word and symptoms and importance of early diagnosis
Watch the Video I made Dedicated to Leo
THANK YOU SO MUCH FOR READING & IN ADVANCE FOR YOUR HELP
A huge thank you to everyone who donated in our greatest hours of need from the bottom of our hearts words don’t even do our appreciation Justice you brought my us time with Leo and each other which has been PRICELESS.
Love and light Always
Forever grateful Matt Kimberly & Savannah & Baby Leo X
You can also help other people through your donations.