Elijah comes from a large family ~ 5 children, 2 of which have cystic fibrosis. He was recently hospitalized for a 21 day stay, which is not unusual when living with this disease but incredibly difficult for a family taking care of so many children while also maintaining their jobs. This lovely family was referred to us by the Children’s Hospital of Pittsburgh and the referral reads “Elijah has been a patient at our CF Center since 2010 and was recently admitted for a 21 day hospitalization. During this time, his parents traveled back and forth from their home to the hospital daily, almost 40 miles each way. While they took turns staying overnight at the bedside in order to be present for supportive and medical decision making purposes, Elijah has other siblings at home, including a brother who also has CF. The mother is a part time nanny and the father is a pastor, both had to take turns being present at home and at the hospital simultaneously with no paid medical leave. As their social worker, I provided the extent of resources available to families through our hospital as well as referrals to outside organizations. Although they worked diligently to make contact with these resources, as you are probably well aware, very few have the ability to assist with the overwhelming amount of expenses that families of children with chronic illnesses incur. At this point, we are approaching the holidays and the family is having trouble keeping their lights on and their mortgage paid. Any assistance you may provide to them would be greatly appreciated.“
I was very grateful for the fact that we were in a position to assist this family due to the generous support of our donors in 2017. I have noticed that there are not many other organizations that assist families with bills that pile up while they are in countless hospital stays over the years due to chronic illness. Both of these parents work in service jobs and are committed to being available to their 5 children.
We paid all of their bills for the month of December to get them caught up and received the most beautiful thank you note in the mail:
“Dear Claire’s Place Foundation ~ It is Christmas afternoon and I keep thinking about you. My children are all happy and grateful for their gifts and I know it would not have been possible without the tremendous help you all were able to give us after Elijah’s long hospitalization. Words cannot express how incredibly grateful we are. It’s not like we spent a ton of money for Christmas, nothing major, clothes, shoes, book bags, but to be able to get them nice things without being stressed about how we would afford anything right now, was simply amazing. You all understand and minister to CF families and that is a rare and beautiful thing. With grateful hearts, Camille, Jeff, Makenzie, Natty, Zach, Reagan and Elijah“
We hope to keep in touch with this family and send them all of our love ~ Thank you for supporting this program!
Julia was a beautiful, vivacious young woman with cystic fibrosis who beat the odds for many years. Her mother and I were at the University of Pennsylvania Hospital in November 2017 sitting vigil with our children, hoping and praying they would both be able to come home with us after extensive lung infections. We CF parents understand the path we walk together and are always drawn to each other sharing about our child and their particular journey with cystic fibrosis.
While Claire recovered just enough lung function to be able to take a train home to Los Angeles, sadly Julia was not able to recover this time. Her hospital stay was just over 2 months and although the doctors and amazing team of specialists at U Penn worked very hard, she reached her final resting place at home surrounded by her loving family shortly thereafter in hospice care.
Julia was loved by all, especially her 5 year old son. Many women with cystic fibrosis are not able to bear children but some are lucky enough to have this experience. Her son was her pride and joy and she will live on in his heart forever. She will be greatly missed by her husband and her mother and I have been very touched to know of her and her brave battle, her triumphs and the angel wings she recently received. Breathe easy dear Julia.
Her mother and I connected again shortly after Julia’s death and she shared with me that the 2 month stay in Pennsylvania, far from home, had caused financial distress and coupled with the loss of her only child, she felt quite overwhelmed with little support. I was grateful to share with her about our Extended Hospital Stay Program and accepted her application immediately. We were able to pay several of her larger bills so that she could feel supported and loved by her CF Community while beginning the long process of grieving.
“During my daughter Julia’s last and final hospitalization, which lasted 2 months, I crossed paths with another CF Mom and we found comfort in each other and our shared experience. I kept her card and found the Claire’s Place Foundation website easily and applied for a grant for assistance considering all of the expenses incurred during our long stay. Their financial help made a huge difference to me and enabled me not to go into further debt, while grieving the loss of my darling girl. In addition to the financial help, knowing there are people who care and donate to this cause during a difficult economy has given me emotional strength and reinforced my faith in the kindness of strangers. I see your face before me Melissa and our meeting changed my life way beyond financial. I am feeling much better as time lessens the pain and heals the soul. I’ve come through the other side with a sense of peace that is remarkable. Of course my sadness and loss is always there, but I am so grateful for the life we had together and for all the emotional and psychological support I’ve received during and since my time with Julia. With gratitude, Julia’s Mom“
Our hearts are with you all ~ all of us walking the road with a loved one with cystic fibrosis or any terminal illness. It can be a lonely and scary place for sure with many ups and downs sprinkled with little miracles along the way.
Thank you all who support this program ~ as Julia’s mom writes, it is a small kindness that we can do for others who are suffering.
Allie is a 15 year old, vivacious teen living with cystic fibrosis. In 2017, she suffered 3 extended hospital stays as her CF continues to progress.
Her Social Worker sent us a referral and describes her family’s situation as follows:
“Allie has been admitted for her current hospitalization since October 30, 2017. It is important for her mother Brandy to be with Allie for supportive reasons but she is therefore unable to work due to how far away the family lives. Brandy’s loss of income during this admission is creating financial burdens for the family in many ways. Even though Allie’s father continues to work, his income is not sufficient alone. As their social worker, I have referred the family to assistance programs to help with some of their bills but these programs have severe limitations and will not cover some of the more extensive expenses such as car insurance which is due to be cancelled and is very important in getting Allie and her family back and forth to the hospital. Any assistance your foundation may see fit to provide will be greatly appreciated.”
Our organization was established because we heard this story so many times and understand on a deep level the amount of work lost and support is required when raising a child with cystic fibrosis. We also understood that there were very few resources for family’s in this particular situation. Living with cystic fibrosis entails many many extended hospital stays over a life time and is absolutely unmanageable for most middle or low income families.
We were thrilled to offer Allie’s family a grant that covered their living expenses for a complete month and caught them up on their car insurance due to the incredible fundraising our donors have done this year. We are grateful to be the shoulder they could lean on during their time of need.
Allie’s parent write “Words can never truly express our thanks for what Claire’s Place has done for us. I made a promise to both my daughters when they were born that no matter what I would always be by their side. Because of all of you I have less stress about getting bills paid. My children understand that due to so many hospital stays this year, there was going to be no Christmas money. But, because of all of you my children won’t need to miss Christmas or go without heat. God bless you all”
Thank you for your continued support of this program ~ as you can see, your donations are hard at work helping families every day that have nowhere else to turn.
Wishing you all a happy, joyous holiday season!
Save the date – Join the Global Giving Movement 11.28.2017
#GivingTuesday is a global day of giving fueled by the power of social media and collaboration.
Celebrated on the Tuesday following Thanksgiving (in the U.S.) and the widely recognized shopping events Black Friday and Cyber Monday, #GivingTuesday kicks off the charitable season, when many focus on their holiday and end-of-year giving.
This #GivingTuesday, Claire’s Place Foundation is partnering with Facebook and the Bill & Melinda Gates Foundation to make your giving so much easier and more impactful. We are setting up our campaign so that ALL donations made through our Facebook page on November 28, 2017 beginning at 5am PST will be free of fees and will be matched up to $50,000 by the Bill and Melinda Gates Foundation. Our “Donate” button on our Facebook page will allow you to donate and share in one simple click ..easy peasy!
Be sure to set your alarms to make your donation early as the matching grant only lasts until they reach their $2,000,000 limit. For those of you on the East Coast, you get a great head start.
We encourage you to share our Giving Tuesday campaign on your own page or even fundraise on our behalf with your friends and family by a simple click of a button. Go to our FB page and click “Fundraisers” on the left side of the page. It will take you to a site where you can choose to “Raise Money”, create your own Giving Tuesday fundraiser and share it will all of your friends and family on social media.
This is the biggest day of the year to show your support for your favorite charities. We hope you are inspired by our mission here at Claire’s Place Foundation and choose to make a difference for families living with #cysticfibrosis on the daily. We are always grateful for you, our loving community of supporters.
Stay tuned for the countdown to Tuesday, November 28, 2017 and get ready to GIVE!
Be sure to “like” us on Facebook so you can take advantage of this great opportunity