Help Emma get to Germany for life saving surgery

Emma has recently been diagnosed with several rare conditions, one of which (Wilkie’s Syndrome also know as SMAS) is life threatening with a mortality rate around 33%. We have recently started a GoFundMe (https://gofund.me/5225fd52) for Emma and whilst trying to raise funds for her surgery is our immediate priority, we are also trying to raise awareness of the conditions Emma has. If our experience is typical (and a large online support group Emma is part of suggests it may be), others, mainly young girls, will be affected and will be struggling to receive a diagnosis.

Emma,16 years old, has had abdominal pain for around 3 years and was admitted to Forth Valley Royal Hospital children’s ward in December 2022 with severe abdominal pain and significant weight loss. She was in for approximately 2 weeks and discharged with a Nasal-Gastro tube and special feed, but no diagnosis. Since then she has had multiple tests conducted, all of which came back normal. Her last consultation around 4 weeks ago, was very upsetting as the doctors referred her to a psychiatrist and stated, they could not help her otherwise. Through her online presence, Emma became aware of a Professor Scholbach in Leipzig, Germany who is an experienced diagnostician, specialising in vascular compressions (the condition we thought Emma had based on many months of medical research carried out by ourselves).

We visited Professor Scholbach on 21st March and Emma received the following diagnoses:

o Wilkies syndrome (superior mesenteric artery syndrome)

o Nutcracker syndrome

o Ehlers Danlos syndrome

o May Thurner syndrome

o Lumber lordosis

o Severe pelvic congestion

o Duodenal paralysis

o Orthostatic hypotension

o Orthostatic pooling in pelvis

Professor Scholbach has recommended Emma has surgery in Dusseldorf, Germany with a Professor Sandmann, another doctor we were aware of from Emma’s support group online.

Most of these conditions are very rare and with Emma experiencing years of excruciating pain, we decided to try to raise funds to get Emma to Germany. Emma set up a GoFundMe account and her twin sister Abbie shared it on Facebook. We have, in around 10 days, raised almost £11,000.The kindness and generosity of people, many of whom we have never met, has been overwhelming to say the least. Many people and organisations have reached out to help Emma, including great support from McDonalds in Camelon, where she has a part-time job, Falkirk FC and multi-national company, based in Grangemouth, Allied Fittings UK.

The impact on Emma’s life has been considerable and the surgery is vital for her to return to something like a normal teenager’s life. Emma has missed most of S4 and all of S5 so far due to her illness, completing only one Nat 5 exam (A grade awarded and Emma received the school prize at Graeme High School). It is unlikely she will return to school. Other than a few hours per week working at McDonalds (when able), Emma has no social life, and her friends are almost exclusively online.