Helping the Stevensons fight SLOS
Donation protected
Hello Everyone,
This is probably the most difficult story I've written but have unfortunately reached a point to where this is our last resort to help put our lives back together. As many of you know, we have been fighting Lily's diagnosis of SLOS for four years and will continue for the rest of her life. Even with insurance, we have spent everything on special medical equipment and early intervention therapy which has greatly benefitted Lily. She is now in a special school but common complications of SLOS are always on the back of our mind (Will she regress to infant-like behavior in a few years? When will her major organs start to fail?) Although we don't dwell on those thoughts, we still feel like we need to share that our future is always going to be a battle as we are creating a campaign to raise money. Part of me is sick to my stomach as I'm typing this because I never thought this would happen to my family.... I shouldn't doubt that saving my daughter's life by having a gtube put in and raising a special needs child was the wrong choice, but sometimes the stress of a high cost health care system takes you to where you don't want to go.
A few weeks ago Brian was in a single car accident which left us without a car.... my parents have let us borrow their old Honda at the moment since the other car we owned we actually sold a few years ago since I was staying home full time (not by choice but out of necessity... Lily required and still does require 24/7 care) and we needed money for her specialized medical equipment. The old photo I posted is of Lily in a helmet that our insurance covered almost $500 but total cost was $2500. Special standers, walkers, strollers, etc. have also been purchased (which are several thousand dollars each), so the decision to go down to a single car had to be made. We unfortunately only had liability insurance so now purchasing another vehicle is impossible. Our parents have all dipped into their retirement funds and have helped to the point where they can't and would put their future in jeopardy if they did. To add to the stress, we were misinformed by our durable medical equipment company that we qualified for 84 hours a week of pedicatric home health nursing.... well, that was just the company itself.... we had to wait for insurance approval and that was denied a couple days ago. Of course we'll appeal that, but this denial took three months and don't know how long it'll take (or if we'll ever qualify). I pretty much take care of Lily like a nurse would, but because she isn't in the hospital often or as sickly as before putting her on a blended diet, we don't qualify for help.
Money that is donated will go towards a vehichle, bills to keep us in our current home and for much needed repairs that were put off years ago when Lily arrived, and for ongoing therapy for Lily. I will post more but needed to start this as I've waited years to ask for help from you. Thank you in advance.
-T
This is probably the most difficult story I've written but have unfortunately reached a point to where this is our last resort to help put our lives back together. As many of you know, we have been fighting Lily's diagnosis of SLOS for four years and will continue for the rest of her life. Even with insurance, we have spent everything on special medical equipment and early intervention therapy which has greatly benefitted Lily. She is now in a special school but common complications of SLOS are always on the back of our mind (Will she regress to infant-like behavior in a few years? When will her major organs start to fail?) Although we don't dwell on those thoughts, we still feel like we need to share that our future is always going to be a battle as we are creating a campaign to raise money. Part of me is sick to my stomach as I'm typing this because I never thought this would happen to my family.... I shouldn't doubt that saving my daughter's life by having a gtube put in and raising a special needs child was the wrong choice, but sometimes the stress of a high cost health care system takes you to where you don't want to go.
A few weeks ago Brian was in a single car accident which left us without a car.... my parents have let us borrow their old Honda at the moment since the other car we owned we actually sold a few years ago since I was staying home full time (not by choice but out of necessity... Lily required and still does require 24/7 care) and we needed money for her specialized medical equipment. The old photo I posted is of Lily in a helmet that our insurance covered almost $500 but total cost was $2500. Special standers, walkers, strollers, etc. have also been purchased (which are several thousand dollars each), so the decision to go down to a single car had to be made. We unfortunately only had liability insurance so now purchasing another vehicle is impossible. Our parents have all dipped into their retirement funds and have helped to the point where they can't and would put their future in jeopardy if they did. To add to the stress, we were misinformed by our durable medical equipment company that we qualified for 84 hours a week of pedicatric home health nursing.... well, that was just the company itself.... we had to wait for insurance approval and that was denied a couple days ago. Of course we'll appeal that, but this denial took three months and don't know how long it'll take (or if we'll ever qualify). I pretty much take care of Lily like a nurse would, but because she isn't in the hospital often or as sickly as before putting her on a blended diet, we don't qualify for help.
Money that is donated will go towards a vehichle, bills to keep us in our current home and for much needed repairs that were put off years ago when Lily arrived, and for ongoing therapy for Lily. I will post more but needed to start this as I've waited years to ask for help from you. Thank you in advance.
-T
Organizer
Teresa Alden Stevenson
Organizer
Greensboro, NC