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Our Glow Ride is now an Inner Glow Ride ~ Read more HERE

June 12, 2018

Hi everyone! So, this August 18th was going to be the date of our 4th Annual Glow Ride for CF in beautiful Hermosa Beach but we have had a huge change in plans. Our founder, Claire Wineland, has been listed for a life saving double lung transplant at UCSD and from what the doctors say, we could get the call at any minute.

As a very small organization, we simply do not have the emotional and physical bandwidth to put this event together while we focus on our upcoming transplant. We hope you all understand ♥ We have made the hard decision to change our glow ride from an in person event to an on line fundraiser so that we don’t leave the families that look to us for assistance “in the dark”.

The money we raise each year at our glow ride is a large piece of our yearly budget and Claire is committed to continuing her foundation, even in her absence. One fantastic thing to keep in mind is that 100% of any donation will go directly to our Extended Hospital Stay Fund since we will have 0 overhead in producing this event.

 

If you are inspired to support our Inner Glow Ride sponsored by Vertex Pharmaceuticals, please consider any one of these options:

1. Create a team on the Crowdrise page HERE and encourage your friends and family to help you get your inner glow on for children and families living with cystic fibrosis by donating to your team. The team that raises the most money will win our prestigious “Milky Way Award” and will be announced on August 20, 2018. This award will include either a personalized video message from Claire that you can share on social media or the option of having her record your voice mail message on your cell phone. We will also include CLAIRITY Tshirts to your entire team.

2. Donate as an individual to the Crowdrise page and help us reach our goal of $15,000. The individual that donates the most money will win our “Shining Star Award” and will also have the option of receiving a video from Claire or having her record your voice mail message on your phone, and a CLAIRITY Tshirt.

3. Donate anonymously to the Crowdrise page but share our campaign far and wide. Sharing campaigns on your social media channels and via email with your friends and family has been proven to bring in 3x the donations. So, please share away!

4. Make a donation to the Crowdrise page and “Get your inner glow on”. Please send us a picture all lit up at night to be posted on our event page and social media channels. We would LOVE to see you participate from afar either as an individual or with your group. All pictures welcome 🙂 Best group picture will be sent our custom CLAIRITY tshirts as a thank you gift for participating.

ALL donations and pictures are due by August 18th and awards will be posted on August 20th 🙂

So, as we prepare for Claire’s big surgery and a new chance at life, we are envisioning her being able to ride in her glow ride next summer with a brand new set of lungs. How cool would that be? We would love for you to participate in person again next year to help us celebrate.

We truly apologize for the last minute change in plans but being on the waitlist for lungs is so unpredictable. We look forward to seeing you all again next year! For those of you who already purchased a ticket, I will be reaching out to you privately with a few options.

2017 Glow Ride for CF Photo Claire’s Place Foundation Board Members, Event Sponsors and members of the Redondo Beach, Hermosa Beach and Manhattan Beach City Council along with our Founder Claire Wineland. Photo Credit: Julia Lofstrandt

 

 

Blog & Events

Claire’s Place Foundation Welcomes New Board Member

June 12, 2018

Welcome New Member ~ David Gersholowitz, MBA, Board Director

David Gersholowitz,MBA, Director

Read our Recent Press Release

Dave is originally from Cape Town, South Africa, but has never been on a safari or in a single gold mine. Rather, after a few attempts, his family moved to the US to pursue the American Dream. Cue “Out Of Africa” Theme…

Dave entered the veterinary field in 2005 when he joined BluePearl Veterinary Partners to launch a large practice in NYC. Working with an amazing team of doctors and staff, Dave grew the NY Region into one of the largest Specialty and Emergency practices in the country. In 2011, Dave transitioned into the COO role for BluePearl and was instrumental in BluePearl’s growth to over 60 locations in 20 states. Then Mars came knocking…

In early 2017, Dave joined Andy Loar, Dave Gardiner and Everett Smith to pursue the next great thing, which is of course veterinary diagnostics. The four musketeers came together to create ZNLabs Veterinary Diagnostics with a simple goal – revolutionize the veterinary laboratory field. We’re working on it! 😊

Dave is married and lives with his wife and two children, Adam and Nadia, in sunny Tampa, Florida. They share their place with their three dogs, Ollie, Fiona, and Kenny. In his spare time, Dave enjoys travel, driving manual cars and looking for deals. Dave earned a BS in Electrical Engineering from USF and an MBA from UCLA Anderson School of Management.

Dave reached out to Claire’s Place Foundation after reading a CNN article about Claire’s Place Founder Claire Wineland’s journey with cystic fibrosis. “We all face challenges in life and I am a strong believer that we each have a choice in how we respond to these challenges,” said Dave. “Claire’s amazing positive outlook on life and desire to help others despite her own challenges is truly inspiring. I was also impressed with the hyper-efficient, entrepreneurial nature of Claire’s Place Foundation. I knew I had to find a way to get involved. I am also excited for anything that brings me back for a visit to beautiful Southern California!”

“In addition to being a smart and driven entrepreneur, Dave is a compassionate, creative, giving and energetic individual. The moment the board met him, we knew we would be lucky to have him,” said Claire’s Place Foundation Executive Director Melissa Yeager. “Dave’s experience and business development skills are a huge asset to the foundation. He has already contributed to the foundation with his creativity, contacts and insight. He is continually thinking of new ways he can help. We are absolutely thrilled to have Dave join our board of directors.”

 

Press

CNN Article: Our Founder, Claire Wineland, has a change of heart regarding transplant

May 24, 2018

Are you one of the many young adults or children living with cystic fibrosis and have begun the painful decline that this disease can sometimes bring about?  Our Founder, Claire Wineland, has recently done much soul searching and has decided to try for a double lung transplant.  For many years, she was adamantly opposed to it until her world became so small due to her quick decline.  We would like to thank Jessica Ravitz, a wonderful, warm and loving writer with CNN for following our journey through this process.  We hope that it helps those of you trying to make this very difficult decision.

FULL ARTICLE on CNN.com

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She sits in front of UC San Diego Health after going to a series of evaluations. PHOTOGRAPH BY MONICA ALMEIDA

Claire Wineland vowed that she wouldn’t have a lung transplant, but her decline from cystic fibrosis made her reconsider.

Why a terminally ill young woman has changed her mind about living
By Jessica Ravitz, CNN
Photographs by Monica Almeida for CNN

La Jolla, California (CNN)To face each day, Claire Wineland undergoes hours of breathing treatments. It’s a reality of living with cystic fibrosis she’s come to accept.

But last month, as the nebulizer hummed loudly in her La Jolla, California, hotel room, she breathed in medicine through her mask and hoped this day would be the first step toward something different.
She’d traveled from Los Angeles with her mother, her best friend and her pit bull, Daisy, who flopped down on the floor atop one of Claire’s ever-present oxygen tubes. A full day of appointments at a nearby medical center awaited her, when she would begin the evaluation process to see whether she might be a candidate for a double-lung transplant.
A year earlier, Claire vowed that she’d never have the major surgery.
“It’s not for me and never has been,” she said at the time.
She was more comfortable dealing with the illness she knew than taking on the unknown. She preferred to focus on leading a purposeful life than worrying about death and how to dodge it.

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She sits in her hotel room with dog Daisy before going to UC San Diego Health for consultations. PHOTOGRAPH BY MONICA ALMEIDA

A series of irreversible setbacks and some painful soul-searching, however, have prompted an about-face in her thinking. Claire, 21, needs new lungs, or she will die — sooner than she’s willing to accept.
The only question is: Did her change of heart come too late?
Feeling trapped

It wasn’t as if the clouds parted and she suddenly saw the light. Claire’s new outlook was the result of a messy and humbling self-reckoning.
She had long managed to push through physical discomfort to lead a life that mattered. After emerging from a 16-day medically induced coma at age 13, she envisioned the Claire’s Place Foundation, which today provides financial support to struggling families affected by cystic fibrosis. She appeared in brutally honest viral videos in which she talked about topics like death and did it with a smile. Since she was 14, she had been taking to stages and wowing audiences with beyond-her-years wisdom. Along the way, she nurtured a love of travel.
She was wrapping up a three-city tour last fall when pneumonia landed her in a Philadelphia hospital for two weeks.
Doctors there sat her down and told Claire she had to stop flying. Period. They told her that her lungs could collapse and that she ran the risk of dropping dead on a plane, she said. They warned that it would be painful and laid out what it would feel like if an air pocket in her lungs burst.
“You will feel like you’re being stabbed to death … and then blood will stop flowing to your brain,” she remembered them saying. “And I was like, ‘OK, I got the message! Copy that!’ “
She took a three-day train ride home and began to settle down.

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She reveals a port for a feeding tube, while in her hotel room before going to to UC San Diego Health for consultations. PHOTOGRAPH BY MONICA ALMEIDA

Cystic fibrosis affects more than 30,000 people in the United States (and more than 70,000 worldwide), according to the Cystic Fibrosis Foundation. The disease causes an overabundance of mucus, which traps infections and blocks airways in the lungs, complicates digestion, affects the pancreas and other organs and, eventually, leads to respiratory failure.

Read: Living while dying: ‘Little Buddha’ wisdom from a terminally ill ‘goofball’
The median survival age is about 40, according to the foundation — a great improvement from the 1950s, when surviving long enough to attend elementary school was rare.
Claire became uber-diligent with her care. She was on top of her dozens of medications, including her shots for cystic fibrosis-related diabetes, endured as best she could the feeding tube at night, even though it made her throw up, and spent extra time with her breathing treatments. For four hours daily, she said, she wore a vest to shake her lungs and loosen mucus. She also tried supplements like turmeric and found comfort in the nettle infusions she drank throughout the day.
But even with all of this, her lung function continued to decline. In one year, she said her working lung capacity fell 10 points — from 35% to 25%. Short walks and visits to the beach left this lover of the outdoors exhausted. Simple grocery shopping became too tough to manage. She had no energy for local speaking engagements and lost her income flow. She felt homebound, trapped and unable to do what mattered to her most.
CFers, as she refers to people with cystic fibrosis, often talk about “the Wheelchair Decision” with dread, Claire said. But when breathing and getting around became too difficult and she got hers in February, it initially felt “like freedom.”
With her best friend, Larissa, taking on the role of “designated wheeler,” the duo could tool around outside. The day she got the wheelchair, they went on a seven-hour adventure around Los Angeles’ Venice Beach, where Claire lives, visiting the canals, going to the park, soaking in the ocean breeze.
And while most of the time, she has no qualms about needing a wheelchair, there are accessibility issues, the sidewalks are a mess, and she can’t be pushed through sand. Inevitably, she’s had those moments when she thinks, “It sucks that I need this. It’s painful that it’s gotten this far.”

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. A friend cups her hands to pound Clair’s chest, a practice known as chest physical therapy, CPT, which helps clear the airways, in her hotel room before going to to UC San Diego Health for consultations. PHOTOGRAPH BY MONICA ALMEIDA

Claire breathes in medicine through a nebulizer as Larissa pounds her back with cupped hands to help loosen mucus in her airways.

Then Claire, who’s undergone more than 30 surgeries and been in the hospital a quarter of her life, received another jolt during a March hospital stay. Medical staff discovered that her portacath wasn’t working. The small dome under the skin of her chest provides a central line into a vein, allowing easy administration of IV treatments — such as antibiotics, which she must take regularly to beat back constant infections. A portacath replacement means surgery, and Claire’s pulmonary function was — and remains — at a level too dangerous for her to go under anesthesia.
Though the portacath was fixable, Claire didn’t know it would be at the time. A wave of terror washed over her. She fell apart and realized it was time to take the transplant idea seriously.
“I can’t go under anesthesia. I can’t fly. I can’t do anything,” she remembered feeling with a panic. “I have completely locked myself in a position of not being able to do anything besides die.”

Ready for the race

After leaving the La Jolla hotel, Claire was wheeled into the Center for Transplantation at UC San Diego Health, prepared to meet with members of the lung transplant team.
She’d eaten a McDonald’s McGriddle sandwich the day before — a secret she employs to put on an extra pound or two before weigh-ins — just in case they asked her and her 95-pound frame to step on a scale. She was armed with questions and a notepad, ready to studiously record all she’d learn. Since she’d been here less than two years earlier and decided against pursuing the transplant path then, she was eager to tell them why this time was different.

A nurse who serves as the lung transplant coordinator, Megan Serletti, spent several hours educating Claire, her mom and Larissa about the process.

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She goes to her first appointment with mother Melissa Nordquist Yeager and Megan Serletti, BSN, RN at UC San Diego Health before appointments for consultations. PHOTOGRAPH BY MONICA ALMEIDA

They talked about the battery of tests that would determine whether she would qualify to get on the waiting list, some of which Claire knew well and described as “gnarly.” They discussed the lung allocation score, the number Claire will get if she’s approved that measures how sick she is and determines where she sits on the priority list.

They discussed what life on a waitlist looks like: the necessity that she stay within a four-hour drive of the center, the importance of not ignoring phone calls, the exercise she’d need to grow stronger and the multitude of blood draws and exams she’d have on her schedule.
“We call a transplant your marathon,” Serletti said. “We tell people to train for your marathon. The day you get called is the day of the race.”
There were forms to sign and questions she’d need to consider. For example, would she be willing to accept lungs from a prostitute?
“I’m fine if a donor had sex in exchange for money,” Claire quipped. “Way to bring the hustle.”
How about from someone who was an IV drug user and contracted hepatitis C, a condition that is treatable?
“Honestly, I’d just laugh if I got new lungs and caught something else,” she said. “I already have the body of someone who’s been around the block.”
Serletti spoke of the realities after surgery, including the drugs Claire would need to take for the rest of her life, the physical and emotional challenges she might face, the changes in lifestyle she’d have to honor.
Claire wrote everything down. She curled her legs into the chair, revealing the tattoo on her left ankle: the thumbs-up “Don’t Panic” logo from “The Hitchhiker’s Guide to the Galaxy.”
“None of it spooked me,” Claire said afterward, over lunch in the transplantation center’s courtyard. “Now that I’m looking at it as something I have to do, I don’t care about any of the side effects. I’m willing to deal with anything.”

‘We both just started crying’

To qualify for new lungs, a person must be sick enough to need a transplant yet strong enough to withstand the surgery and recovery.
There were 1,436 candidates for lung transplants as of April 20, according to the United Network for Organ Sharing, which manages the nation’s organ waiting lists. Of those, 122 had a primary diagnosis of cystic fibrosis. Last year, of the total 2,449 lung transplants performed, CFers accounted for nearly 11% of the recipients.

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She and her mother Melissa Nordquist Yeager, attend a Lung Transplant Education session with Megan Serletti BSN, RN at UC San Diego Health. PHOTOGRAPH BY MONICA ALMEIDA

A lung transplant is not a cure, but it can extend a life, if all goes well.
Of those who received lung transplants (not just CFers), dating to 2000, an average of 84% survived after one year, nearly 54% survived five years, and slightly more than 30% survived 10 years or more, according to the organ sharing network’s data.
Deciding to go for a lung transplant, let alone a double-lung transplant (the only option for CFers), is no small matter.
Claire first visited a transplantation center at UCLA when she was 14 but said that was too early for the idea to make sense for her. At 17, she checked out the program at Stanford University but was turned down, her mom explained, because they could tell that Claire wasn’t interested. She checked out the option again, at the very place she had returned to now, when she was 19.
While her peers were being tasked with picking out prom dresses or decorating dorm rooms, she was being asked to contemplate her mortality.
She prayed that she’d want it as much as she knew her parents and doctors did, but her heart wasn’t in it, she said. She was still happy with what she had and, as an adult, able to make her own decisions.
Her parents, who split up when Claire was 3, struggled to make peace with her choice.
“Just think of it as insurance, even if you don’t want to do it,” her mother, Melissa Nordquist Yeager, pleaded at first. “Get on the list so you can change your mind.”
But ever since she’d been a small child, Claire had a sense of self, an understanding of her condition and a sort of intuition Yeager needed to trust — even if it made her uncomfortable.
Her dad, John Wineland, said Claire “has a relationship with her body that is sacred” and described his daughter’s thinking: “This is the body I came in with. This is the body I’m going out with.”
And as her parent, he said, “I have to live with it.”

Claire was born with cystic fibrosis and has spent a quarter of her life in the hospital. (Family Photo)

To see her struggle and deteriorate over the past year was both sobering and excruciating for them. So when Claire broke down and said she’d changed her mind, they were thrilled, excited and terrified.
“I was blown away, so grateful, happy and hopeful. It was a sign that she wasn’t willing to give up,” remembered Yeager, who was with Claire at the hospital in March and heard the news first.
“I called her dad, and we both just started crying,” Yeager said.
“I’m just praying my ass off, really, that everything goes smoothly, that she can get a shot at more time on the planet,” Claire’s dad said. “There are a lot of hoops she has to jump through to be accepted.”

‘Are you ready?’

It’s not uncommon for CFers to change their minds about transplant, social worker Leslie Fijolek assured Claire.
Fijolek, who serves on the transplant team, remembered Claire from the last time she visited UC San Diego Health. Fijolek’s job is to think about “who are these [new] lungs going to live with,” she said, get a sense of the care system recipients have in place and provide support to make the process successful for everyone involved.
Is Claire compliant in taking her medications? Is she prepared to relocate near the transplantation center, where she’ll need to be for at least three months after the transplant if she gets one? Who’d move with her and drive her to appointments?
“How’s your mood been? Any depression and anxiety?” Fijolek asked.

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She and her mother Melissa Nordquist Yeager, attend a psychological evaluation with Leslie Fijolek LCSW, a clinical social worker, at UC San Diego Health. PHOTOGRAPH BY MONICA ALMEIDA

Claire mentioned how her decline, starting last fall, threw her into a depression. They talked about how she’d lost the ability to manage her physical decline, how she’d like to find a therapist who works with patients facing chronic illness, how she turns to arts and crafts projects to get out of bed — and out of her head — on rough days.
Photos on a cell phone are passed around, showing the papier-mache tree she’s been working on and how the bark and surrounding foliage are remarkably true to life.
Fijolek turned serious, locked eyes with Claire and said what everyone in the room already understood: “You know you need a transplant.”
“I was so young. I was so naïve,” Claire answered, describing where she was before. “All the side effects used to scare the shit out of me. My relationship to transplant and all it entails has changed.”
Fijolek, who was all too familiar with Claire’s past ambivalence, pushed her further.
“Let’s say you got listed in about two weeks; it means you can get a call at any time,” she said. “Are you ready?”
Claire assured her she is.
“It’s a big change from where you were,” the social worker said.
“I didn’t want to waste anyone’s time,” Claire answered.
Her mother sat by, fanning herself with a medical brochure, listened and wiped a tear from her eye.

 

All she had

The last appointment of the day was with one of the transplant team’s pulmonologists.

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She and her mother Melissa Nordquist Yeager, meet with Dr. Kamyar Afshar DO at UC San Diego Health. PHOTOGRAPH BY MONICA ALMEIDA

Dr. Kamyar Afshar explains the importance of Claire building her strength so she can handle the transplant, if she’s given one.
Dr. Kamyar Afshar got down to the nitty gritty. He wanted to know what antibiotics still worked for her, how many bowel movements she has a day and the last time she coughed up blood.
“Two days ago,” she told him. “It’s usually one or two times a month.”
He prescribed walks every day to build up her endurance and suggested she increase her continuous oxygen flow from her normal 2 liters per minute to 6 liters per minute when exercising. He looked down at her worn Birkenstocks and said, “Your shoes will have to change.”
The doctor cranked up her oxygen and told her that if she wanted to get a transplant, she’d need to be able to do 15 sits-to-stands in a minute. He said this was non-negotiable. She won’t be able to use her arms after the surgery to get up from a chair or bed, he explained.
He asked her to climb off the exam table and show him some squats.
Claire — who used to do yoga six days a week, loved to swim and even went through a phase when she did difficult workout videos like P90X with her dad — crossed her arms in front of her chest and showed the doctor all she had.
For the first time that day, her cheeks had color.
“I don’t anticipate you’d be on the list for too long,” Afshar blurted out.
Given her blood type and her condition, he said, she’d probably get a transplant within three months of being approved — if she’s approved.

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She poses for photos with her mother Melissa Nordquist Yeager in front of UC San Diego Health after going to a series of evaluations. PHOTOGRAPH BY MONICA ALMEIDA

The first full day of evaluation appoitnments complete, Claire and her mom breathe sighs of overwhelmed relief.

Claire’s eyes opened wide, and her mom appeared to melt into her chair. Suddenly, it seemed real.
“Three months!” Yeager said outside the center. “That made me want to throw up a little bit.”
“I’m a little overwhelmed,” Claire said. “I need to go back to the hotel and binge-watch ‘Real Housewives.’ I want to see white women fight over nothingness.”

Hoping for a chance

The truth is, according to Claire, not longing for different lungs for most of her life served her well.
She was able to “work with what I had in front of me,” she said, rather than fixate on what she didn’t have. She also suppressed that part of herself that might have simply dreamed of something more.
“If I had told myself things could be better than they are now, I think I would have driven myself crazy with frustration and jealousy over other people’s lives,” she said.
In changing her mind, she said she had to swallow some of her pride and “open this floodgate of emotion that I kept really deeply buried.”

A slew of tests still awaited Claire, but she was now all in. She had opened herself up to the possibility that life — for her — could be different and not as challenging.
“For the first time ever, I’m going there, and it’s really scary,” she said. “Now that I actually want something better, what if it doesn’t happen? What if I don’t get it? What if it goes wrong?”
The pressure is on, and Claire can only hope that she will be given her chance.

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Families we have assisted

Meet Mason and Grayson ~ Extended Hospital Stay Grant Recipients

March 22, 2018

 

Mason and Grayson doing their “Vest Therapy” together

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!

 

 

 

 

 

 

 

 

 

 

 

Blog & Events, Families we have assisted

Meet Maddox ~ Extended Hospital Stay Grant Recipient

February 14, 2018

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!”