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Families we have assisted

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.

Families we have assisted

Meet Amy ~ Extended Hospital Stay Grant Recipient

March 4, 2019

What a wonderful turn of events for us here at Claire’s Place Foundation.   As painful as it was to lose our dear founder, Claire Wineland, we find joy in helping others who are struggling with cystic fibrosis and know that Claire would be thrilled that the foundation she worked so hard to start will live on in her honor.

This is Amy, she is a young woman living with cystic fibrosis and a recent double lung transplant recipient.  For her, being a young adult and financially responsible for herself, work and income were a huge issue due to her health decline.  She recently left a full time position and had gained part time employment to accommodate her intense CF regimen and medical appointments but this job did not include sick leave or vacation time so her income suffered greatly.

In May, she was admitted to the hospital with a severe infection and placed in a medically induced coma to buy some time for the doctors to see if they could find her a lung donor to save her life.  She waited in that state for a month, her family and medical team hoping and praying to find a match in time.  Luckily, on Sunday June 17th, 2018 a match was found and Amy was given a double lung transplant, a new lease on life. The next 2 months were spent in patient and she was recently allowed to go home and begin the slow and steady recovery process.

We are happy to let you all know that through our Extended Hospital Stay Grant Program we have been able to help with her living expenses for the next 2 months so she can rest and recuperate post transplant.

Amy writes “Claire’s Place Foundation has been uniquely accommodating and understanding regarding the enormous financial strains having Cystic Fibrosis places on individuals and  their support networks. In my experience it has proven willing to provide crucial financial support for expenses like rent that can be threatened by multiple, extended hospital stays (in my case it was over eighty-days in a row …). I am extremely grateful to Claire’s Place Foundation for providing critical support during a very uncertain time in my life – the need for a double lung transplant in the summer of 2018 was not at all something I anticipated, and threw my plans up in the air completely. Claire’s Place was so easy to work with and genuine in their willingness to help, it made a challenging, unpredictable situation easier. I’m beyond grateful for the chance to still be here, and will hopefully pay forward the kindness and support I’ve received from individuals and groups like CPF. “

This grant is only possible because of our incredible donors and your support of people living with cystic fibrosis.  We are eternally grateful for all of you and are sending our prayers and good wishes to Amy as she begins this next chapter in her young life.

 

 

Families we have assisted, Uncategorized

Meet Brian ~ Extended Hospital Stay Grant Recipient

January 21, 2019

Over the years, we have developed some very special relationships with social workers at CF Centers where there is a great need for additional family support.  One of those is the Children’s Healthcare of Atlanta whose social worker Judy is always on the lookout for a family in dire financial straits and is responsive and compassionate about finding them some assistance.  To date,  we have received and processed many referrals and the stories are both heartwarming and sometimes heartbreaking.  The city of Atlanta and surrounding areas has a median income for a family of 4 of  $53,843, as stated by Data USA and costs associated with cystic fibrosis can soar up to as high as $10,000 per medication not to mention hospital co pays, missed work, travel to and from the CF Center and care for other healthy siblings.  You can read more about this in an article on Georgia Health News that discusses the effect of low income regarding missed opportunities for advanced screening and cost of care.

A recent family that was referred to us by CHOA is Brian’s family.  Brian is 15 years old, has 1 sibling and shares his time between his mother and father.  Brian has recently developed Cystic Fibrosis Related Diabetes which makes his treatment regimen even more complex and his blood sugars now need to be monitored constantly.  In 2018, Brian experienced 4 long term hospital stays of at least 14 consecutive days in Atlanta and one recent stay at Cumberland Hospital in Virginia due to additional specialized care he needed that was not available at his center.  Cumberland Hospital is a 2 to 3 hour drive each way from his home near Atlanta causing a huge financial strain on a family that was already struggling to make ends meet.

The entire family is affected by cystic fibrosis from emotional needs to financial needs and everything in between.  We were honored to make a connection with this family and provide assistance with bills that were neglected so they could handle what was right in front of them.  The stress relief they experienced after having their outstanding debt paid and being current on all of their bills made such a difference.  Thank you to all who support this important program!  As always, we know and are constantly reminded that our program is valuable and is making an impact on families and young adults living with CF.

Brian’s mother writes:  “Due to our son being admitted at a hospital out of town, funds were very low after making sure he had the necessities he needed.  Claire’s Place helped us pay our past due bills and get caught up.  I am personally grateful and honored that I was awarded assistance.  Without your help, I wouldn’t be able to travel to see my son or for work.  This really was a true blessing that came right on time.  Forever thankful “

Families we have assisted

Meet Elijah – Extended Hospital Stay Grant Recipient

August 14, 2018

This is Elijah, he is an incredibly charming and precocious young man with cystic fibrosis who recently spent many extended stays in the hospital.  Not only that, but his brother also has cystic fibrosis and his older sister suffers from sickle cell disease.  I cannot imagine what this family goes through on a daily basis taking care of all 3 children’s medical needs, working full time jobs and trying to make time to enjoy their life.  Their parents work hard to ensure that their children are well and that they also complete their school work as well as a few extra curricular activities.  It cannot all be about staying well and they have somehow achieved a great balance.  This grant was special because we were able to help this family get caught up on all of their bills and help them pay for graduation fees and a class ring for their daughter, who even though she missed quite a bit of school last year, was able to graduate with her class mates.  If you have ever walked in the shoes of a family like this, you will understand what a huge feat this is! Big congratulations to this family for working so hard, staying positive and being a shining example to others in difficult situations.

Elijah’s parents write “Claire’s Place Foundation has allowed me to catch ALL of my bills up. I ended up behind on my bills due to my son and daughter being hospitalized.  In addition my daughter had senior fees, dues and trips I was trying to pay for.  She has worked so hard despite her disease and I didn’t want her to miss out on her senior activities just because we didn’t have the money. This is truly a blessing for my family as a whole.  

I honestly can’t express how grateful I am.  I was literally speechless when I read the email and just began to whisper because I was overtaken with such joy.  I really don’t feel deserving but I believe its God’s grace and mercy that allowed us to get this grant. The grant has alleviated so much financial stress that my family as a whole are without words. As we read the email we just stared at one another thanking God and thanking God for you.   Thank you……”

 

Thank you to all of the people who support this program ~ you are the reason we were able to assist in such a big way.

Families we have assisted

Meet the K Family ~ Extended Hospital Stay Grant Recipients

June 26, 2018

I love all the K’s  – meet Kyle, Kaylan, Karter and Kade 🙂  This beautiful young family has 2 boys diagnosed with cystic fibrosis, Karter and Kade.  Unfortunately, their younger son Kade, has had many many hospital stays and a much rougher time with his illness than his older brother Karter.  Being available for both boys while running back and forth to the hospital, doctor visits, lab checkups, hotels, gas, etc. has put them in a very difficult financial situation.  As we have said before, many CF families decide that at least one family member must stay home to care for the child while the other becomes the breadwinner.  But, what if that just doesn’t cover the bills plus all the extra care needed to make sure your children are covered by insurance and all of their daily needs are met?  This brings us to a situation where both parents must work and still try to juggle everything on their own. Sounds impossible, right?  Well, we agree!   We are so grateful that we were able to be a small bridge for this family while enduring another extended stay for young Kade.  Their mother writes “Receiving this grant was an amazing blessing for our family.  Between our 2 CF kids, I have had to miss 12 days of work just in the last month.  Missing those 12 days means that I don’t get paid because I am out of leave time.  This grant allowed the bills to get paid and we didn’t have to stress while helping our children.  That helps ease a parents heart so much!  Again, we are so very thankful for this grant.” Big love to all of you who have recently started following us or joined our mailing list and donated.  You are the reason we are able to help families like this, to know that they are cared for by a large community and that they don’t have to do this all alone.