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.
Double the fun! For those of you living with cystic fibrosis or raising children with cystic fibrosis, you understand the hours of work that go in to each day just to maintain your health. Now, multiply that times 2! This young family came to us due to several hospital stays between their adorable twin toddlers Mason and Grayson. In their short 2.5 years, they have already spent months in the hospital while their father takes as much time off work to help as possible but is currently out of paid days off. The financial stress has caused this family to dip in to most of their savings and fear that as the children grow, the expense will just intensify. When I received their referral, my heart truly went out to them and if they lived closer, I would be the first to volunteer an extra pair of hands.
We were so grateful that we could be a small bridge of support to them while they were in the middle of a very difficult year. With your donations, we were able to pay all of the family’s bills for a month so that they could replenish their savings account and prepare for the next hospitalization. It is important for families to understand that it truly takes a village to raise a child with CF, much less twins. Your donations go a long way in bringing not only financial aid but the ever important emotional aid when families are desperate to stay with their sick child but bills are piling up in their absence.
Their parents write “This grant has allowed us to catch our breaths for the first time in a while. One of our twins has had a number of hospital admissions that have not only taken an emotional and mental toll on all of us but has drained our financial resources. My husband has used all of his time for the year, and if he needs to take time related to our boys’ medical issues, then he is not getting paid. This generous gift has given us a chance to replenish our savings to help prepare for future expenditures related to admissions and treatments. My husband and I are very grateful for this generous gift. A weight has been taken off of our shoulders and allowed us to put more of our focus toward enjoying time with our children. We are truly blessed and appreciative of all the wonderful and kind people that have been placed in our lives.”
Sending all of our prayers and support your way!
Meet Maddox, a 7 month old new CF baby who was referred to us by his social worker at Children’s Healthcare of Atlanta Emory University Hospital. Maddox has already spent a month in the hospital due to complications that can arise from this disease, leaving the family overwhelmed and exhausted trying to maintain their jobs and take care of an older sibling who does not have CF. Oftentimes families will choose to have one parent stay home and care for the child but occasionally we see families where both parents must work in order to maintain their healthcare insurance costs and opportunities. Cystic Fibrosis is a very difficult disease to qualify for private insurance and if a parent has group coverage through a job, it is something that they hold on to dearly.
Maddox’ family looked to us for assistance with their mortgage payment and a few outstanding hospital bills that were threatening collection involvement. We were so grateful to be able to provide them with the assistance they needed to keep their heads above water and turn their attention to learning the ins and outs of raising a child with CF and all of the elaborate home treatment required. We will keep this family in our thoughts and hope that they will find a supportive CF community to help them along the road as we have.
“Thank you so much, Claire’s Place Foundation, from the bottom of our hearts! There are not enough words to express our gratitude for this kindness. The weight that has been lifted off this Mom and Dad’s hearts is significant and truly appreciated. Raising children is a daily challenge in itself and then you add in a Chronic disease, it truly takes a tribe. Thank you, again!”
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.