Adventure, A Dream Wedding, and Cystic Fibrosis
Photo source: NBC Chicago
Caleigh Haber has spent 27 years battling cystic fibrosis.
For some time now, Caleigh’s boyfriend, Bryan, has been helping her with care needs. Caleigh’s over-all health status appears fragile: Aside from late-stage CF, she’s also “in kidney failure (becoming more common for those with CF), has lost a lot of weight, and is struggling to breathe.” (NBC-5)
Caleigh’s CF had progressed to end-stage and she was in desperate need of a double-lung transplant in order to continue living.
She was fortunate in finding a compatible donor and her sorely needed operation was accomplished.
What a relief that must have been for Caleigh! As it’s been said, an outcome such as this was like ‘getting a new lease on life’.
Caleigh had the surgery. But, bad news was ahead.
Caleigh and her transplant: bad news
Unfortunately, the most heart-breaking outcome of her double lung transplant occurred: Caleigh’s body rejected the transplant.
“That’s pretty much the worst thing you can hear as a transplant patient,” Caleigh told NBC-5.
But, eager to move forward, Caleigh applied for another transplant.
However, in accordance with the medical community, her request was denied. The professional opinion was she would most likely not survive another surgery.
After receiving this devastating news, Caleigh sat down with Bryan to mutually share the disappointment about not being eligible for another transplant, and to discuss the options left on the table.
Together, Caleigh and Bryan chose to skip further time-intense appeals to get surgical approval. Instead, they decided to jump-start their wedding. The goal was to spend together whatever time Caleigh had left to live.
Wedding plans immediately became the topic of discussion for the young couple and both their families.
The couple chose a date for the fall wedding, just six days away. With no time to spare, they were anxious to get their new life started.
Time was definitely a factor in the process. But, so was money.
Since personal funds were not available to pay for the wedding Caleigh dreamed of, the family started a GoFundMe for Caleigh and Bryan’s special day.
In the end, everything for Caleigh and Bryan’s wedding was donated, from the dress to the flowers and to the reception. Pre-wedding make-up and nails were also included.
Due to time-limits, the bachelorette party was a gathering of women pampering Caleigh at the cosmetic shop before going to a movie. Attenders included three additional generations of Caleigh’s family.
Three days before the wedding, a Facebook entry shows the couple nestled together on the side of a hill. Caleigh was holding their pup. The site overlooked a wide river and its ornate bridge. Below the photo, Bryan commented: “To the world you may be one person but to one person you may be the world.”
Family and friends came from all over the U.S., at a moment’s notice, to “celebrate (the) inseparable love,” of Caleigh and Bryan.
The couple exchanged vows in an outdoor park-like setting. Huge potted carnations edged the path in front the arbor, which held the same floral choice poking their faces from the greenery at its sides and top.
It was here, in this setting, that Caleigh shared her self-written vows which included this love-filled message for Bryan: “I’m sorry, my love, that you won’t always have me in your life, but I promise you every minute I’m alive I will dedicate myself to you.”
At the cutting of the cake, Bryan is shown with a mouthful as he prepares a piece to feed Caleigh, whose wide smile and teasing posture display her humor and happiness.
In her wedding photos, Caleigh looks like a princess in her softly fitting gown and her upswept hair. Her graceful presence overshadows the oxygen canula she wears.
For the future
“We’ve devised a plan to put all our last eggs into living,” said Caleigh, who added: “I will never stop fighting to stay alive.”
To Bryan she says: “You inspire me to fight harder, to put myself through struggle, to look past chaos, to drink ensures and to take my medication.”
"We ride the wave of life together no matter how scary," Caleigh concludes.
Another inspirational cystic fibrosis story
From Resources of Independent Living comes another inspiring story about a young lady who chooses to live life on her own terms. Claire Wineland, age 20. “has continued living out loud, even as her body fails her.”
This article about Claire, entitled an “Inspiring Story of One Person’s Life with Cystic Fibrosis,” paints the young lady as a whippersnapper.
Claire was born with meconium ileus, a tell-tale sign of CF. This condition occurs when a baby’s lower section of their small intestine is blocked with fecal matter. As such, the baby is often born with a bloated belly. The stoppage occurs due to the more thickened body fluids of CF. This blockage prevents the baby from having bowel movements after birth. About one in five babies with CF are born with this condition, which generally requires surgery. (Seattle Children’s)
Nevertheless, right from the start, Claire demonstrated the spirit of a ‘larger than life’ little girl.
We are told that Claire bounced into life. As a small child, she “played hide-and-seek with nurses, ripped out IVs to race around the hospital floor naked, and left an explosion of glitter in her wake.”
We learn that, as a teenager, Claire “got boys to carry her uphill when she was tired, taught her best friend how to flirt and watched her doctor squirm as he gave her the safe-sex talk.”
Claire as an adult
In spite of spending a quarter of her life in the hospital, being adventurous is not a stage she grew out of.
Despite a progressive decline in her health, Claire has managed to pull off a number of feats:
- Initiated Claire’s Place Foundation (at the age of 13) for “heightening awareness and providing education,” for the public and to offer “skills, financial and emotional support” to families with CF,
- Created a series of videos that went viral
- Penned pieces for national audiences, including one for CNN.
- Is writing a book
- Speaks at numerous public functions
- Has joined forces with Zappos for Good to design, at company expense, the renovation and decoration of a playroom and intensive care rooms at the Children’s Hospital of Nevada at UMC in Las Vegas.
Claire has survived more than 30 surgeries, a 16-day medically induced coma, and spent a week in ICU with sepsis and pneumonia, after honoring a speaking engagement, in spite of feeling ill.
Since graduating from high-school, Claire has lived independently in a shared-apartment, and has travelled to Europe with a childhood friend.
Claire is a proponent of living life as the person you are without putting on pretenses. Labeled as “a California free spirit”, Claire has been seen wearing jeans with a T-shirt that reads “Sexual Intellectual.”
Claire, as a confirmed independent thinker, has chosen not to apply for a lung transplant, even though her lung function has dropped to a mere 30%.
Instead, she has chosen to participate in clinical drug trials, which are not open to those with lung transplants. By participating in the trials, Claire explains she will have the opportunity to help find a cure for CF.
Although the stories of Caleigh and Claire are different in a number of ways, they still forge a commonality. Both are strong spirited, bucking convention, and following the path that makes the most sense to them.
These two young women, in the ways they have chosen to live their lives, are both worthy of respect and recognition.