Abby’s ABnorMAL Adventure

$54,870 raised

From 190 Donations
TARGET $60,000

Please support this cause

AUD
$
*** Donations are tax-deductible *** What would you do if you saw your child wasting away without any answers? Like most parents we would do anything for our children? Abby was once so full of life and now she is bedridden. Sadly we know we are not the only parents in Australia who have to leave the Country to find medical care for their child’s needs so we gracefully ask you to consider helping us in any way possible. At the beginning of 2020 Abby was a healthy, happy, active 14 year old girl who was striving, with her dance partner to be an Australian Ballroom Champion. They were well on their way to achieving that goal by placing 2nd in the under 21 category at the Australian Dancesport Championships in December 2019. In February 2020 Abby contracted what seemed to be an everyday viral infection. She had a cough, sore throat and oddly was suffering from severe headaches and massive blood noses. After ruling out anything sinister under our GP’s advice and our own experiences with viral infections we assumed this infection would pass and life would go back to normal. Three months later things were getting worse, Abby's weight plummeted to 45kgs with Dr's putting everything down to mental health, attention seeking, anxiety and anorexia. Failed hospital visits and numerous tests caused Abby's world, and ours to be plagued with her being constantly fatigued, suffering extreme nausea and excruciating pain battling daily with headaches/migraines, temperature dysregulation, blurry vision and blackouts, abdominal pain, dizziness, brain fog, severe reactions to smells/medications/heat & cold, nerve pain, numbness and no circulation in her legs, no hunger cues, extreme weight loss and malabsorption. COVID-19 restricted us from being able to get Abby to Sydney specialist's for help but in late 2020 Abby was diagnosed with Gastroparesis (her stomach is paralyzed) and POTS (a condition that affects blood flow & circulation). Days, weeks and months went by but nothing was getting better for Abby. In October 2021 Abby was then diagnosed with a rare compression disorder, MALS (Median Arcuate Ligament Syndrome) this means that her celiac artery is compressed which restricts blood flowing through to the organs in her upper abdomen. After ALOT of research and countless sleepless nights their are a series of compression disorders that unfortunately can go hand in hand. Most recently we discovered another compression of her left renal vein which makes us think there could be further compressions that we just do not know about. Finding help with these very rare conditions in Australia has been very challenging. Abby is now 16, with the last two years going by in a blur, unable to dance at all or do everyday activities like go to school or walk for more that 1 minute without her legs going numb or most shockingly being not able to drink more than 200mls per day or eat more than a small palm full of food without wanting to curl up and die from the pain. We have been lucky to find a leading Professor & Surgeon located in Germany that we need to get Abby to ASAP for a full specialized ultrasound that will explain what is happening in her body, why it is happening and then a surgical plan to fix it before it is to late. At this point in time we do not have total costings of what we are looking at, all we know right now is we need to be in Leipzig on Tuesday the 17th May with surgery booked in Düsseldorf on Thursday 19th May. Since reaching out to Germany they have reviewed a few of Abby’s scans and are pushing for us to proceed so quickly as her weight is not stable and if it drops too low surgery will not be able to go ahead. Therefore this is happening and it is very hard for us to ask for help to assist with this journey. We appreciate from the bottom of our hearts any donation that you are able to give but if you are not in a position to be able to donate it would mean a lot to us if you could please share our story ❤️ Donations made to Abby through the charity Helping A Friend in Need (HAFIN) are tax deductible.
Update
29 Jun 2022
WE HAVE MADE IT HOME!! Six weeks away and we are so happy to say we are finally home. We were able to have a few days in Paris to take in some sights and for Abby to have a croissant. We did have to cut it short and head back to Düsseldorf as Abby was having really bad chest pains. Turns out we all had Covid so had to spend our last week in isolation before heading home. To be in a foreign country and all get COVID despite being super careful was a disaster but we made it through. Abby was upset that she couldn’t spend more time with all the amazing people that we were fortunate to meet on her journey but lots of pics were shared around. For now Abby is resting and continuing to recover which will take some time. She still has good and bad days but hopefully soon there will be more good than bad. We would like to thank every single person who has helped keep our spirits up while we were battling through some very hard days. Your care and compassion has helped us through this part of Abby’s journey. We are hoping to spread and raise awareness through Australia to help others struggling with a diagnosis for these rare disorders but for now we are just going to get over the jet lag and have big cuddles with her best mate, Peanut ? A CTA was done after we discharged from the clinic which showed a hematoma in one of her stents and some fluid in her abdomen. Professor Sandmann is confident both of these issues will resolve over a little time so for now we will just be mindful of them. I have said this before, this journey is not a sprint to recovery it is definitely a slow marathon. I will do my best to try and explain what was causing all the pain and suffering that Abby has been experiencing. MALS (median arcuate ligament syndrome) - MALS is a condition in which the median arcuate ligament presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver, and other organs) as well as the nerves in the area (celiac plexus). hEDS (hypermobile elhers danlos syndrome) - hEDS happens when your body doesn't make a protein called collagen in the right way. Collagen helps form the connections that hold your body's bones, skin, and organs together. If there's a problem with it, those structures can be weak and more likely to have problems. NCS (nutcracker syndrome) -Nutcracker syndrome is a rare vein compression disorder. It occurs when arteries, most often the abdomen's aorta and superior mesenteric artery, squeeze the left renal (kidney) vein. Nephroptosis of the right kidney -Also known as a floating kidney and renal ptosis, is a condition in which the kidney descends more than 2 vertebral bodies (or >5 cm) during a position change from supine to upright. May Thurner Syndrome -May-Thurner syndrome is a rare vascular condition that affects a vein in your pelvis. It occurs when a nearby artery compresses the left iliac vein. This vein brings blood from your pelvis and legs back up to your heart. The compression prevents blood from flowing properly, leading to narrowing and scarring. -On top of this Abby’s right iliac vein was also being compressed by the protruding intervertebral disc at her L4/L5 SMAS (superior mesenteric artery syndrome) -Superior mesenteric artery syndrome is a digestive condition that occurs when the duodenum (the first part of the small intestine) is compressed between two arteries (the aorta and the superior mesenteric artery). This compression causes partial or complete blockage of the duodenum. IVCS (inferior vena cava syndrome) -Inferior vena cava syndrome is a very rare constellation of symptoms resulting from either an obstruction, or stenosis of the inferior vena cava. It is caused by physical invasion or compression by a pathological process or by thrombosis within the vein itself. Splenic Vein Compression -Splenic vein thrombosis (plural: thromboses) is an uncommon condition in which the splenic vein becomes thrombosed. PCS (pelvic congestion syndrome) -Pelvic congestion syndrome is a condition that causes chronic pelvic pain. It's thought to be caused by problems with the veins in the pelvic area. This is the lower part of your belly (abdomen). Veins are the blood vessels that carry blood back to the heart. POTS(postural orthostatic tachycardia syndrome) -Postural tachycardia syndrome is an abnormal increase in heart rate that occurs after sitting up or standing. Some typical symptoms include dizziness and fainting. Severe Lumber Lordosis -Lumbar lordosis is when the back has an excessive curve, which may be situated just above the buttocks. This is often accompanied by lower back pain. This is causing the intervertebral disc at her L4/L5 to protrude Well that’s it in a nutshell, our Abby certainly likes to be as rare as the unicorn that she is ?
Update
21 May 2022
After diagnostic testing with Prof Thomas Scholbach in Leipzig, Germany we learnt that Abby has been suffering from 8 abdominal vascular compressions, as well as hEDS (a connective tissue disorder), severe lumber lordosis and when standing her right kidney dropped so needed nephropexy (her right kidney sewn to her 11th rib. The eight compressions: 1. MALS (median arcuate ligament) 2. Massive NCS (nutcracker) 3. SMAS (superior mesenteric artery) 4. Strong PCS (pelvic congestion) 5. Severe MTS both right and left iliac veins (may Thurner) 6. Splenic vein compression 7. Inferior Vena Cava compression 8. Right renal vein compression with no collaterals Abby underwent a gruelling 8 hour surgery yesterday with the amazing Prof Dr Wilhelm Sandmann at the Clinic Bel Etage in Düsseldorf, Germany. Abby has a long recovery road ahead of her but we are very grateful to be here.
Update
05 May 2022
FLIGHTS ARE BOOKED, we have 10 days till we fly out of Melbourne bound for Germany. We are forever grateful to all who have shared Abby's page and donated. The flights cost a whooping $27,617.46, the reason behind this cost is Abby needs to lay down as much as possible to try and alleviate some of the pain. The diagnostic testing that Abby will have when we arrive in Leipzig on the 17th May has also been paid for by this cause, $4991.20. It wont be until after the testing in Leipzig exactly how much the surgery will cost so for now please keep sharing for Abby.
DONATIONS190
Mycause Logo
David Peng
Fri, 26 Aug 2022
$ 100
$ 100
Mycause Logo
Sheridyn
Fri, 26 Aug 2022
$ 5
Hey, Abby I hope everything gets better and you start getting better! Ik it’s not much but I hope it helps!! Sending much love ?
Hey, Abby I hope everything gets better and you start getting better! Ik it’s not much but I hope it helps!! Sending much love ?
$ 5
Mycause Logo
Freya Steindl
Thu, 25 Aug 2022
$ 5
$ 5
Mycause Logo
Briana Thomas
Thu, 25 Aug 2022
$ 5
I hope Abby feels better soon! Lots of love and support from NZ
I hope Abby feels better soon! Lots of love and support from NZ
$ 5
Mycause Logo
Peter and Shao ling Walsh
Wed, 24 Aug 2022
$ 50
Peter and shao ling
Peter and shao ling
$ 50
Mycause Logo
Bonnie Tsui
Wed, 24 Aug 2022
$ 200
$ 200
Mycause Logo
Stella Chung
Sun, 21 Aug 2022
$ 50
Get well soon!
Get well soon!
$ 50
Mycause Logo
Patrick Chan friends of Nolo & Bonnie
Sat, 20 Aug 2022
$ 50
$ 50
Mycause Logo
Bonnie Tsui
Sat, 20 Aug 2022
$ 100
$ 100
Mycause Logo
Anonymous
Fri, 17 Jun 2022
$ 50
$ 50
RAISING FUNDS FOR
charity-logo
Helping a Friend in Need (HAFIN)Helping A Friend in Need (HAFIN) ABN 86611164197 disburses tax deductible donations to individuals and families for the direct relief of poverty, sickness, suffering, distress, misfortune, disability, destitution or helplessness. Donations are tax deductible and are disbursed directly to the beneficiary.

About Fundraiser
GC&LC
Greg Chamberlain & Larissa Chamberlain
Lloyd, NSW
Created Apr 2022

$54,870 raised

From 190 Donations
TARGET $60,000

Please support this cause

AUD
$
RAISING FUNDS FOR
charity-logo
Helping a Friend in Need (HAFIN)Helping A Friend in Need (HAFIN) ABN 86611164197 disburses tax deductible donations to individuals and families for the direct relief of poverty, sickness, suffering, distress, misfortune, disability, destitution or helplessness. Donations are tax deductible and are disbursed directly to the beneficiary.
About Fundraiser
GC&LC
Greg Chamberlain & Larissa Chamberlain
Lloyd, NSW
Created Apr 2022