Hotel help in NYC
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Just a try to see if anyone might be able to help. My friend's 6 year old daughter Olivia has a diagnosis of Phelan-McDermid Symdrome (22q13 deletion syndrome). There is an experimental procedure that she qualifies in NYC. Does anyone have a connection for a hotel to donate a room (or a broom closet), or a rental unit in NYC during the week of October 17th or any time in November? If this procedure works, she may be able to walk or talk some day!
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Wow. So sorry to hear about this diagnosis. I am unfamiliar with it. What are the symptoms besides inability to walk and talk?
Good luck!
Alison -
We were faced with a similar challenge when we had to take our daughter to NYC for Brain Surgery. Finding a place to stay in NYC is not only costly but proven to be difficult.
We found The Ronald McDonald House (http://www.rmdh.org/) - They put us up for $35 per day. It is a great facility and centrally located to most of the hospitals. They even provide FREE transportation to and from the hospitals.
I don't know what Phelan-McDermid Symdrome is, but it does not sound good. Traditionally, the disease has to be life threatening to get into The Ronald McDonald house, but if it is not, perhaps they will make an exception.
When she calls to see if they can stay there, have her ask for Helen Stafford and tell them that Kim & Dave Strange (Breanna's Parents) said what a great place it was and the staff was incredible, and they come highly recommended.
I am not sure of the outcome, but it is worth a shot.
Best of Luck.
Dave
Dave, sorry for the late response. Thank you so much for the information. They actually did check the Ronald McDonald house and they were told that they didn't fit the criteria. It would have been a wonderful opportunity.
Their next step is to do a donation drive, which is what they started a few days ago. So, we'll see how that goes.
Thanks so much for the suggestion. I hope all went well with your daughter.
Take care,
Alison
Kimberly, so sorry - I never saw that you had posted! Here's a link to some information:
http://en.wikipedia.org/wiki/22q13_deletion_syndrome
http://22q13.org/j15/