Getting Oliver to Boston
Oliver has MPSIVa - Morquio Syndrome. Last week during fairly routine surgery it was discovered he needs two life saving surgeries.
Gisborne
Oliver's trachea has and "s" bend in it and he requires trachea reconstruction surgery. At it's worst his trachea has the opening of a 20c coin, just 2mm and he struggles to breath at rest. Trachea reconstruction has not been done in New Zealand and only handful of times internationally.
Added to this the compression on his neck (C1-C3) makes this surgery even more risky. Once he recovers (approx 6months) he will then have to undergo decompression and stabilisation surgery on his neck.
I would like to take Oliver to see the Morquio specialist, who has lead the treachea surgery in the USA, at the LPA Conference (Little People of America). I have been in contact via email and skype and they are extremely worried for Oliver, as well as willing to help. I just have to get him there.
Once we have been to the conference we will head to Nemours in Wilmington, Delaware where we will have further consultations as well as a plan moving forward.
Rachel Lodewyk's involvement (page creator)
We have already moved mountains getting Oliver the weekly medicine he needs, relocating to San Francisco for over 2 years. We thought we could come back to New Zealand and settle back into life. I have already asked so many for so much but now at this most critical stage I have to ask again. Sitting and waiting for a catastrophic event is something I can't do. Oliver will not get better on his own. Time is not his friend.
Latest update
Thankyou 12 June 2016
I can't thank everyone enough...we leave in 2.5 weeks and all the travel and accommodation is being finalised over the next few days. As I have committed to the trip and will be heading to Nemours Hospital in Delaware they have set up a skype meeting next week - so many top specialists in one meeting all in anticipation of meeting Oliver in person. As stressful and overwhelming as all of this has been I think what if.. what if we had chosen to do nothing but sit and wait... that would be harder. I'll be updating Oliver's FB page, Oliver and Ruby in the next few days so anyone who wants to follow Oliver's trip around the USA can.
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