As of last Friday we have now got to be impatient at Children’s Hospital seven times in seven months with each stay being at least a week, the longest 2 days shy of a month. Juliet has taken two chopper rides and one via ambulance, one thing we can say is she has definitely had the best flight attendants in the skies.
We have started to become known at Children’s to the point, Dr’s and Nurse’s will come and visit even if they are not taken care of Juliet at the moment, I guess it’s good to have them on your side when you need them (or all the time). We have however spent nearly as much time with them as we have at home, so they truly are our second family.
Children’s has a mixed emotion feel every time you’re there, on one hand you have the “My child is getting the best possible care in the best possible facility there is” on the other you have the “I’m in a hospital where it’s never just the common cold”, you pass other parents in the halls or elevator and we all have that same thought or look in our eyes wanting to ask the question, “what is your child here for?”, sometimes you do, but most of the time it’s just understood that no case is better or worse than the other, we all have a sick child and no parent wishes that on anyone. We wish we could just take it away and make it be us instead of them, at times feeling helpless.
The hardest part of all of these journey’s has been to understand why God chose our little girl to be diagnosed with Vici Syndrome? Of all of the things that could happen to a child why this?
“Cast your burden to the Lord and he will sustain you – Ps 55:22”
If you want to know more about Vici Syndrome: http://www.nature.com/ejhg/journal/v22/n3/full/ejhg2013142a.html
Here are some resources we are trying to get awareness elevated, Vici is a fairly new Syndrome and not a lot of research has been done, the diagnosing gene was only found a couple of years ago. We are trying to start the process of helping to raise awareness.
http://www.rarediseaseday.org/
RareJul 
My prayers go out to you & your precious family
LikeLike
our grandson also has this rare syndrome he will be 6 in June. xx
LikeLike
Where are you located? We would love to connect with your family.
LikeLike
Justin did you get my email? My son has Vici syndrome. Bev is my mum xx
LikeLike
My child have 18q deletion, from 18q12 to 18q22. EPG5 gene is also deleted. Does it mean that he also have Vici or not?
LikeLike
If your child has the features of Vici, then the deletion is significant enough to be Vici. Let me know what other questions you have, we do have a Vici forum started with other families from all over the world, what country are you located in?
LikeLike