Help Taylor Eat Again

Our daughter Taylor (14) has a rare condition called MALS - Median Arcuate Ligament Syndrome

In May last year she had a relatively sudden onset of extreme upper abdominal pain and nausea that worsens when she eats or drinks anything. As you can imagine this has meant she's lost a lot of weight, has been malnourished and dehydrated, has spent more than 100 nights in hospital, has undergone an absolute battery of tests and procedures, spent more than 6 months being tube fed and missed the majority of her first year at college!

NOTHING our NZ Drs have tried so far has made a difference to her pain/nausea and her tolerance to eating/drinking has not improved. Epigastric pain when eating is the primary symptom of MALS but it is incredibly difficult to diagnose and medical knowledge world wide is scarce. MALS occurs when the Median Arcuate Ligament sits too low on the Aorta and compresses the Celiac Artery that supplies blood to the stomach. This compression also damages nerves in the same area causing extreme pain that has been likened to end stage pancreatic cancer!

Here's a cool animation that explains MALS a bit better than I do - https://youtu.be/o7J8tUt6KuU

The only possible cure for MALS is surgery.

Unfortunately medical experience with MALS in NZ is almost non-existent as it is still a very misunderstood condition; research and experienced surgeons aren't easy to come by. We have a wonderful team of Drs in Christchurch who have been supportive of us searching internationally for an experienced and knowledgeable specialist to help Taylor and we have been so lucky to have found the skills of Dr David Yeo in Sydney Australia.

Dr Yeo's recommendation is for Taylor to undergo a Celiac Plexus Block that will numb the nerves he believes to be affected and if Taylor is then able to eat without pain it will indicate if she's a candidate for surgery or not. If she's eligible for surgery he will release the ligament as well as remove any affected nerves. It's a serious operation that comes with risks but has about an 80% success rate for relieving a person of the pain and nausea experienced as a result of this compression.

After 9 months of watching our daughter suffer so much the possibility of a cure for her is the hope we've been looking for. Unfortunately the need to travel to Australia for treatment means it comes at a cost that is not funded and the additional financial pressure having a sick child has placed on our family and the current climate around leading in NZ we are unable to meet this cost on our own. Because further testing is needed we also don't know exactly what we'll be heading into but need to be prepared in every way, including financially, for surgery to occur during the same trip. We've had estimates provided by Dr's Yeo's clinic for the cost of all medical expenses and that along side flights, accomodation, insurance, incidentals and a small buffer for additional care if needed means we're looking in the vicinity of 30-35K. They have also indicated Taylor should be able to be seen as soon as the end of March/early April!

We're so humbled by the love we've already received throughout this journey and feel very uncomfortable having to ask for financial help but we can not let money be the only barrier standing in the way of a pain free and bright future for Taylor.

To follow Taylors journey check out https://www.facebook.com/gettingontaylorsnerves

We sincerely thank anyone who's taken the time to read this page and are wholeheartedly and eternally grateful for any contributions or awareness that this has raised.

Karl, Zalie & Taylor xxxx