Hey All! Its been a long time since we’ve posted an update. We have been doing the usual, doctor’s appointments, physical therapy, occupational therapy, keeping up with a now one year old (WOW)! We were in the slow but sure process of transferring to Duke in Durham, NC, where Ali’s parents just moved to be close to family and have a safe, accessible, and free place to live. We WERE planning on moving to North Carolina just before Christmas. However, we ran into troubles with insurance; then in early October Jake became ill with a staff infection in his LVAD that caused him to be hospitalized and forced him IV antibiotics and home health until just this week. Jake then began to develop a pressure sore from being confined to his wheelchair. It started to become clear that we might have to seek other options that would provide a way to his next operation more quickly.
Shortly after Jake was diagnosed with the infection, I (Ali) received a call from Dr. Nir Uriel at University of Chicago asking about Jake, he had recently heard of his infection and had heard bits and pieces of his story from a mutual family friend. Dr. Uriel and his team, a couple years back took over the LVAD and Heart Transplantation program at University of Chicago, after being trained at New York Presbyterian. They now specialize in high risk cases and transplant and explant people that most other centers will not, people like Jake. He implored us to come to Chicago and asked to be a part of our journey. We brushed off the idea because we didn’t have a place to live in Chicago or money to afford to live in Chicago, it seemed like an unrealistic idea.
However, after the election we realized that Chicago may be our only option. Jake currently has his insurance through a special provision of the Affordable Care Act and an act that now most likely will be repealed or significantly changed. Right now we don’t know if Jake will lose health coverage or when. So with the pressure of the unknown and a center in Chicago willing to take a chance on Jake we knew this is was the best option for our family because they promised to complete Jake’s surgery within the next couple months and give him the highest priority for transplant. Rush hospital in Chicago is also running clinical trials for the type of brain injury Jake has, trials that we could be a part of over the next year, trials that are legitimately helping people like Jake walk again within weeks! Living in the unknown when its comes to insurance and money,Chicago seems like the only guarantee to know Jake will be able to have his next major operation.
Our current plan is to go up to Chicago December 18th through the 20th to meet with the team at U of Chicago and begin to look for a place to live. Jake is from Chicago and most of his family lives there, however no one really has wheelchair accessible housing that we need for Jake so staying with family seems to be out of the question at this point. We will return to Missouri for Christmas and then beginning of January we will be packing up a UHAUL and moving to Chicago.
So here is where you can help!
Jake requires full time care that I (Ali) provide because we cannot get it paid for through insurance and I have a very active one year old so I have not been yet able to go back to work (something that I desperately want to after Jake’s next operation). Because of this our family’s total income per month is $793 from Jake’s disability. I have stayed afloat because of people donating to us over the past year and I was employed until February of 2016. BUT the pot is running dry, I have a little amount of money left. With moving to accessible housing in Chicago with no jobs and little income we will need to pay our entire first year’s rent up front. Cheap rent in Chicago runs about $1,500 to $2,000 per month. Paying the full year up front would be at least $20,000. So we need to raise about $30,000 before the beginning of 2017 to ensure that Jake can have a life saving operation and an accessible home.
Here is what the money raised will go towards:
$20,000-$24,000 to a full year’s rent
$1,000 to flight to Chicago for evaluation (Jake cannot ride in a car long term due to the formation of the pressure ulcer)
$1,000 to moving expenses to Chicago
$3,000 to utilities and medications over the next year
$1,000 to keep Ali insured over the next couple months while she can’t work when Jake is having surgery
So we are asking for help, help to get my husband the life saving operation that he needs. We are selling a majority of our possessions, entering contests, applying for grants and everything you can think of to get to Chicago. We still currently owe about $40,000 in medical debt from his first stay in the hospital that we will not be able to pay on, both of us have thousand of dollars of interest piling up of our $100,000 of student loans in forbearance, we are borrowing a family member’s ten year old car so believe me you will not be funding a luxurious lifestyle for us. You will be fulfilling a wife’s desperate attempt to keep her husband alive and giving a daughter a chance to grow up with her father around. So if you can please give.
How you can give!
By Mail (Check or Cash): 2426 Old Tavern Rd. Lisle, IL 60532
If you can’t give financially you can still help! Share, share our gofundme page, share this blogpost, or just tell people that might want to help about us and what they can do! And you can vote for us starting tomorrow Tuesday November 22nd to win a new car from Jake’s hometown dealership.
Under entries you can see our submission under Ali G. You can vote once per IP address per day (so once from your phone, once from your iPad, once from your computer all in one day). Voting will be open to the general public beginning at 12:01 am November 22, 2016 and end at 11:59:59 on November 30, 2016. The top 5 vote getters will be notified that they will move on to the second phase of the contest on December 1, 2016 The 2nd phase of the contest requires each contestant to make a 2 minute to 3 minute video of themselves explaining how winning a brand new Chevrolet Sonic will change their life.On December 6, 2016 video submissions will be posted to the website and voting will be open to the public on the website. Only one vote will be allowed per day per IP address. Public voting will run through December 21st. Winner will be contacted on December 23rd, 2016. Winner will be awarded the prize on December 24th, 2016.
If you can please do this and do it often, we will either keep the car to get around the city, when Jake is called for a transplant, to go to therapy and traveling to clinical trials over the next year OR we will sell the car immediately to be able to pay for our housing expenses in Chicago.
We will be sending out Christmas cards with our story, a photo and a support letter explaining these financial needs. If you or someone you know or your church would like one please message us with your address.
Pray for us, this is a scary time for us and to be completely honest I don’t know if I can tell my husband I can provide enough money to quite literally keep him alive even over the next year. We know Chicago is where we need to be and hopefully we will be able to make it happen.
Love to you and your loved ones and a Happy Thanksgiving!