Families we have assisted

Meet Aria – Extended Hospital Stay Grant Recipient

April 25, 2019

Claire’s vision and mission to help people living the day to day life with cystic fibrosis is being realized in large and small ways across the country. This mother’s responses to our post grant follow up questions tells her family’s story and what the support meant to them. We are so very grateful for your support as we carry Claire’s light forward through these grants.

1. How did you find out about Claire’s Place Foundation?  

I heard about Claire’s Place Foundation through our wonderful Social Worker at CONFIDENTIAL. However, I was aware of the foundation from my CF mom group where I learned more about Claire herself, may she rest in peace. 

2. How, specifically, has Claire’s Place Foundation helped you and your family?

Claire’s Place Foundation has helped my family get through a tough time, financially but honestly beyond that.  Receiving help emotionally lifted a huge amount of pressure off of our plate. Things were really piling up already, being admitted before Christmas, we didn’t know what to expect.  We have 2 other kids, and we were already keeping things to a minimum and looking forward to just spending time, especially for my youngest daughter this was her first Christmas.  We wanted to give the kids a smile to enjoy the holidays but be realistic that money was just not there.  They seem to understand, and it broke my heart for them to say all they wanted was their baby sister home.  Emotionally I just didn’t know how to get through each day, without getting angry or frustrated. We had no idea how serious things were going to get. Rent will be overdue and fees; but it wasn’t just one, with the weather being so cold our light and gas bills were already pushing to disconnect as we couldn’t keep up with the total account, trying to keep up with the minimum due payments, they wouldn’t take anything at that point unless it was paid in full.  We still had day care costs because of course we needed to hold the spot upon her release, car insurance due, car payments.  It was just all coming down.  At the same time, I tried to focus on the doctors giving me information on all the new tests, procedures, treatments that our little one was getting. While working a full time job, leaving work to run home pick up laundry make sure my other children had things they needed, switch out so the other can get to work; made me feel like the ball in a pinball machine. When all I wanted to do was sit and hold my daughter and let her feel that she was going to be ok, I couldn’t.  Of course when we didn’t think things could get worse, the disconnection notices started to come, one of us losing a job at the same time, and maxing out using credit cards to keep afloat. Providing our family with this financial support allowed us to be able to just take a sigh of relief, the words honestly can’t describe.  The help we received from Claire’s Place Foundation allowed us to not only pay bills and balance out the rest, but give us a stepping stone to get ahead.  It left room for us to focus on family and being present with each other, especially for our other two girls that don’t quite understand or worry more than they should.

3. Can you please provide a few sentences, in your own words, describing your situation and your feelings about receiving this grant that we can use on our website and in our newsletter? 

Claire’s Place Foundation provided my family a true sense of relief.  Feeling the weight of the world while worrying about your child who is sick at the same time leaves you numb. We haven’t been financially stretched this thin in a long time; where I didn’t see a positive outcome nearby.  We were already behind and having to miss work some days, not having enough paid time off from work to cover myself, I had to get back to work because I knew bills were coming.  I was truly worried, having to ask myself what we can do. Where can we turn? Will this work out? Having to think about all the possibilities for my youngest daughter with CF and the other 4 people I am responsible for put me in a stage of panic. We don’t have many people we can rely on to help watch our other children so we did the best we could in changing schedules, we literally would be like a revolving door.  I would try to pick up my other kids from school a few days a week and have a few minutes to catch up while racing back to the hospital to tag team out and get back to my daughter.  The exceptional work that Claire’s Place Foundation does leaves me speechless.  They allowed us to take a moment and get back to spending time with each other have some comfort and we can be put ahead again.  I honestly felt like I was drowning and receiving this generous gift pulled us all out.  The weight that was lifted off our shoulders honestly gave us hope that things would be alright.   

Words cannot truly express how grateful we are.  We are honored and humbled to have been helped in a way that allowed us to get back on our feet plus a step ahead and focus on continuing to fight until CF stands for Cure Found!  Thank you a million times over.

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