When two people marry, it’s a day full of love and happiness. But sometimes there’s a hidden story that can make the event almost too poignant. And as some people are keenly aware, life can be all too short. So for the terminally ill, it’s vital to make the best of what little time they have. And for this woman, it was by marrying the man she loved in the most colorful way she could.
Weddings can be emotional. It’s sometimes hard to hold back the tears as the bride walks down the aisle or as the best man, groom and father of the bride each deliver their speeches.
Most often, though, the tears that flow at weddings are tears of joy at seeing a couple making a commitment to each other for the rest of their lives. However, sometimes the ceremony can have a truly tragic tinge. Indeed, for some couples, the famous wedding vow “till death us do part” can take on a real meaning far too soon in their lives.
Shelby Benoit – née Sibal, sometimes known as Squeeker Lee – from Lincoln, Nebraska, is 23 years old. She has end-stage cystic fibrosis and rheumatoid arthritis. Around the clock, Benoit breathes with the aid of an oxygen tank. Her lungs work at just 19 per cent and she is not able to get a lung transplant.
Cystic fibrosis (CF) is a non-contagious genetic disorder. And though it’s present from birth and does not develop with age, many people – one out of every 25, in fact – unknowingly carry the gene that triggers it. To develop CF, though, a child must inherit the faulty gene from both parents.
The faulty gene that causes CF controls the flow of water and salt in the body. Consequently, a dense mucus accumulates in the lungs and other internal organs, which in turn causes life-affecting symptoms that affect the whole body. And although a CF sufferer may sometimes appear healthy, the condition is a daily challenge.
Serious infections can occur in the lungs due to the amount of mucus. As a result, the lungs may not function at their optimum level, with patients needing daily nebulizer treatments as well as hours of physiotherapy. Infections can lead to stays in hospital, sometimes for weeks, affecting home and work life.
What’s more, if mucus blocks the pancreas, the stomach will not receive the enzymes it needs in order to process food. Consequently, some sufferers may have to take as many as 50 pills a day in order to aid digestion and breathing. And if that wasn’t enough, CF can be a lonely condition to live with.
Indeed, those with CF can pose a threat to each other. Cross-infection can occur when viruses unique to the carrier are passed on to someone else with CF, posing a serious risk to the health of bother sufferers. It is therefore not advised for two CF patients to meet face to face. Consequently, clinics are segregated and support groups just don’t exist.
Cystic fibrosis can lead to other medical problems such as infertility, bone disease, and diabetes. Given this catalog of problems, life expectancy for those living with CF is low. However, while 60 years ago a CF child was lucky to see school, of roughly 30,000 American sufferers, many can now hope to live until their 30s or 40s.
Benoit, however, is not one of the many. Ineligible for transplant, her lungs work at less than 20 percent of their capabilities. Doctors say she will be lucky to see out another year. She was diagnosed with CF at the age of eight – a late diagnosis since the symptoms were clouded by those of her juvenile rheumatoid arthritis.
In fact, the year of her diagnosis would prove to be a tough one for Benoit’s family. On top of her own concerns, her brother was involved in a motorbike crash, her mom was found to have breast cancer and her dad died of colon cancer. Meanwhile, Benoit herself was destined for a life of physiotherapy, medication and being on a constant oxygen supply.
What’s more, in 2012 Benoit underwent open-heart surgery. Yes, on February 26 – coincidentally her birthday – her face began to swell. And after being persuaded by her mom to go to ER, doctors found a blood clot and operated when her blood pressure failed to stabilize. Had she ignored the swelling, Benoit might not have lived.
Along this bumpy road, however, Benoit met Kyle. Introduced by mutual friends, the pair forged a strong friendship. Together, as they made their way through health issues and challenging times, that friendship grew and the pair fell in love.
Benoit told the LittleThings website in an email, “He was really like my knight in shining armor. We clicked together so well, so fast, it was like we’d been together for longer than we’ve been alive. It’s really one of those things that when you know, you just know.” In February 2016, though, Benoit’s health deteriorated.
Benoit’s soon-to-be-husband popped the question on the eve of Valentine’s Day. They had to cancel their original plans, however, because Benoit was sick. They immediately set a date – August 13, 2016 – but Benoit was hospitalized for more than a month in the spring. Friends and family, though, decided to arrange the day regardless.
So, when Benoit was asked what color she wanted as the theme for the day, her reply was simple. “All of them,” she said. “I just really adore rainbows.” And so, in accordance with the bride’s wishes, the whole rainbow was included in her bouquet, the groom’s buttonhole, her socks… and both of their hairstyles.
In the absence of her father, Benoit had both her brothers escort her down the aisle. Her dad wasn’t far away from her heart, though. She carried a small pendant containing a framed photo of him, attached to her flowers so that he would still play a part in her big day.
Also not far away was Benoit’s best friend, Kate Bush. The pair met through shared health problems, as Bush also has heart and lung issues. Under the user name BreatheDucky, Bush shared photos of the happy day to the image-sharing site imgur.
Since the wedding, Benoit has been in and out of hospital. Doctors simply can’t predict how long she has left in this world. But in the meantime, she’s making the best of whatever time she has. In fact, she has set up a crowdfunding page at YouCaring to raise money to help make her life easier. What a perfect wedding gift a small donation would be…