On to Plan B!

6/21/17 UPDATE:
Hi Friends,
So, after further review and calmly thinking about what will be the best way to move forward, I wanted to share this update with you.

To meet Josh's needs, it's been decided that the best thing to do for Josh is to build a small, first floor addition on to our home . The addition will be a small bedroom with an adjoining accessible bathroom. This will completely eliminate the elevator, completely eliminate the cost of the upkeep and maintenance of the elevator, and eliminate any risk for mechanical failure in the future. With him being on the first floor, all he will need to rely on is opening and closing a door to get in and out of the house.

This campaign was started asking for help to raise money for the elevator. So, in the spirit of honesty and full disclosure, I am reaching out to let you know that the project has changed from a home elevator to a first floor addition. I want to make sure that everyone is aware of this change. With this change, if anyone is uncomfortable with their donation being used toward the home addition as opposed to the elevator, simply message me through this site, and we will return your money to you.

We hope you understand the change in plans!
Thank you!!
Tough Team Tramontano!
xoxoxoxoxoxoxoxoxoxoxoxox


Hi Friends,
So, I am keeping a very good sense of humor as I write to you asking for your help.  As you know by now, Josh has SMA type 2, a neuromuscular disorder which causes him to be unable to walk and requires the use of a 300-pound power wheelchair.  Over the years, we have spent tens of thousands of dollars on home modifications making our home accessible for Josh.  One of these modifications has included having a residential elevator installed so Josh could access his bedroom and accessible bathrooom on the second floor.  (Note to self: next time build a one-floor ranch.  Live and learn.)

Well, friends, you guessed it, after 17 years of hard, demanding daily use, the elevator has met its demise and is now fully non-functional.  What to do, what to do with a 300-pound wheelchair, in a two-story home, a broken elevator, and a kid who can't walk??? To be straight, direct, and to the point, I need to raise $20,000 for a new elevator.... and fast.  

Many of you will ask, "Well, doesn't insurance pay for this?"  The answer is no.  Insurance does not pay for any kind of home modifications.  (Insurance also does not pay for that spiffy wheelchair accessible minivan you see us driving around in either.)  

Finding funding for home modifications for disabled people is extremely challenging and time consuming. Right now, time is of the essence.  Josh has places to go and people to see!  He's graduating from high school on Friday.  In a couple of weeks, he will be starting work as a camp counselor.  In August, he will be living at home and attending Quinnipiac University.  My project for today will be contacting the Hamden Fire Department to see if they will assist in carrying his wheelchair and him down the stairs so that Josh is able to get to Yale New Haven Hospital tomorrow to receive his third Spinraza treatment for SMA.  This elevator is truly his lifeline to the outside world.  

As many of you know, I am recently divorced.  I am now on this journey with very little to no support from my
ex-husband.  I won't sit and write a sob story to try and make people feel sorry for us.  This is not who Josh or I are or what we are made of.   

When my strength, determination, and resilience is being challenged to its fullest, I know I need to reach out for help.  So, Josh and I are reaching out and asking for help from our village, from our tribe, and from the people who have loved, carried, and supported us for the past 17 years.  Unfortunately, this comes down to asking for money, something that is always so very difficult to do.  This project comes with a very hefty price tag of $20,000.  

By breaking it down, it seems very attainable.  I simply need to ask 500 people if they would be willing to donate $40, or even ask 1000 people to donate $20.

There are two ways we are asking for your help:
1)  please consider making a donation to Josh's "I'm Stuck in the Elevator" campaign; and 
2) please share this with any of your friends and family, along with a personal note asking them if they might be willing to help out one fabulous kid.  

We truly thank you from the bottom of our hearts.  
With love,
Jenn and Josh a/k/a Tough Team Tramontano!