A young Hunter family is praying for a miracle.
NBN News recently met Melissa and Andrew Thompson, to raise awareness of his battle with a mysterious condition that’s left doctors baffled.
But in the past 24 hours, the new father’s condition has rapidly deteriorated, and tonight, he’s fighting for his life.
DONATE HERE: https://www.gofundme.com/AndyandMel
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As someone with Marfans Syndrome, Andrew Thompson’s story tonight was very close to home.
I currently have an aortic arch and an illiac anurysm and next week see a nerusurgeon for a possible cerabral anurysm. The minute i saw Andrew on the news i knew he had marfans – we all have “that look”!
What really scared me for Andrew is calling it a mystery illness and not marfans. There are many variants and if Andrew doesnt see the right specialists, he may not make it. I lost the sight in my right eye due to the initial eye sugeon not being familiar with marfans – within 3 weeks i had lost my sight.
Ive had 3 previous anurysms stented which have saved my life and only due to my surgeon knowing about the syndrome and actung fast with each one
I too am now suffering severe headaches and neusea etc – anurysm? due to marfans i have cysts on the spine, these may leak fluid – called a cerebral fluid leak, – same symptoms. Has Andrew been assessed for Arnold Chairia Malformation? Same symptoms. MS – Im also being checked as we have a higher incidence of developing MS.
No two people with MS are affected the same and if you haven’t already Andrew, please ask to see Professor Richmond Jeremy. He is a leader in genetics with a passion for what he does and a particular interest in Marfans. There are many other very similar DNA mutations connected to the Marfans mutation of the affected DNA. I also recommend joining the closed Facebook page of support for fellow Marfans as there is so much more you need to know.
I cant stress enough that Andrew and his family need to push for a diagnosis – there is no mystery!
Marfans is classified as a rare desease so as such, we often get blank stares from health proffessionals and reluctance to treat us.
Andrews family need the very best specialists who specialise in marfans and marfans related syndromes asap.
Can you please pass this along to his family. I would hate to think he didnt survive this and always wonder if he was correctly diagnosed and could he have been saved.
Proffessor Jeremys favourite saying is “Knowledge is power” and how right he is!
My thoughts and prayers are with Andrew and his family.
Stay strong and positive xxxx