Imagine living your entire life shying away from sunlight. And you don't even get to be immortal or sparkling (we're talking to you Twilight). This is exactly what Oliver Kei has to contend with, every day of his life. You see, Oliver suffers from a rare disease that makes him extremely sensitive to UV light. This alone would be more than enough to plunge most people in misery.
Not Oliver though. Thanks to his great attitude and the support of his family, he’s managed to live a happy childhood. Nonetheless, getting to this place in his life was a long process that started with a very scary diagnosis. So, how did his family learn to deal with all this? Let’s take a deeper look into Oliver’s unique story.
They All Thought He Was A Beautiful, Healthy Boy
When Oliver was born, he was welcomed into the Kei family. Noelle, her husband Albert and their four children formed a loving household. Oliver seemed to be a perfectly healthy baby and everyone loved to take care of him. They were all happy to have a new addition to the family.
There was no reason to believe that anything was wrong. Noelle took care of him like any other newborn child. She made sure he was well-protected and had everything he could need. However, he started to show signs that all was not well.
The First Signs Of Alarm
Soon, after his first birthday, Noelle realized that Oliver's face had more freckles than usual. Despite efforts to combat this strange occurrence, he still had very dark freckles on his skin. Furthermore, he even developed a mole, which alarmed Noelle’s mom when she saw it.
She encouraged Noelle to go to the doctor. More specifically, to get an appointment with a dermatologist. Noelle did so without thinking anything too serious could be going own. However, the dermatologist's grave diagnosis ushered in the harsh reality Noelle would have to accept.
An Omnipresent Enemy
Oliver’s diagnosis meant that he would have to avoid sunlight for the rest of his life! As one of the specialists told Noelle, they should avoid vacations on the beach and sadly, the disease had no treatment. Therefore, Oliver would never be able to lead a normal life.
In this case, the sun wasn’t the only enemy; lightbulbs, as well as, cigarette smoke, could also harm little Oliver. Noelle was in shock. At only 18 months old, Oliver’s life was about to change forever. The entire family would have to learn to adjust.
The Name Of The "Beast"
The disease was called Xeroderma Pigmentosum and it was as scary as the name. It meant that Oliver was much more susceptible to the effects of the sun than most people. His parents decided to take every necessary precaution to make sure he received minimum exposure.
Considering the fact that they lived in California at the moment of the diagnosis, the sun was almost inescapable. They had to quickly learn how to implement changes around the house. Many adjustments had to be made, to ensure that Oliver was as safe as possible.
The Rarest Of Diseases
Oliver was diagnosed with a disease that only 1 in 250,000 people in the United States suffered. The rarity of the illness means that there aren’t many research programs focusing on finding a possible cure. This genetic disorder has a great influence on the quality of life of those afflicted by it.
As a result of this disease, body cells are unable to repair the damage that the sun causes to DNA. This is a normal mechanism we possess and we don’t even notice it as it takes place. However, Oliver and patients like him lack this recovery mechanism.
A Life Filled With Immense Risks
The problem with Oliver’s ailment wasn’t the overabundance of freckles; this diagnosis meant that Oliver is at a much higher risk of suffering from different types of cancer. He is more likely to develop skin malignancies and his eyes are at risk as well, if subjected to this exposure.
Furthermore, the life expectancy for people with Xeroderma Pigmentosum is much lower than other people. Without the proper measures put in place, they can die before they even reach the age of 20. This possibility worried Noelle and Albert deeply. Would Oliver's life always be at risk?
Learning To Take Every Precaution
Under the guidance of the medical specialists, Noelle and Albert learned about the measures they needed to take. Noelle applies sunscreen to Oliver every two hours. He’s always covered from head to toe, even inside of their home. Oliver’s siblings have also learned about their brother’s condition.
Adjusting to their new normal wasn’t easy, however, they decided they would find a way to make it work. Furthermore, they sewed special clothes so that Oliver would be able to go to school and learn, as every child should. Oliver’s great demeanor is a great help in dealing with this.
Figuring Out A Way To Enjoy The Beach
Although specialists told them to forget all about the beach, the Kei family is very resourceful and imaginative. They wait until the sun is down to go on beach trips, and preferably when there aren't many people there. That way, no one stares at Oliver in his special suit.
They get to enjoy the beach at nighttime and admire the night sky from the comfort of the sand. These special adventures make the family feel almost normal, which is just was Oliver deserves. Oliver enjoys these outings very much as he gets to play with his siblings.
His Family Banded Together To Support Him
Oliver’s brothers have become experts at helping him get ready for school. It is a time-consuming process and Noelle seems to be very thankful for their help. Furthermore, thanks to their loving nature, they have adapted to the changes that were necessary for the household.
Besides, summer vacation means that the entire family changes their schedule. Instead of getting up early, they stay up very late and go outside. The kids play in their backyard, well into the night. Everyone goes to bed late and they sleep-in without the anxiety of getting up early for school the next day.
Preparing Him For Adult Life
It is important to Noelle that Oliver learns how to take care of himself, amid his special condition. She wants him to have the possibility of leading an independent adult life. Noelle understands that he needs to be able to remember every detail of his routine.
This way, when it’s time for Oliver to go to college or move out of the family home, he will be able to stay safe. Minimizing the risks is instrumental for patients with Xeroderma Pigmentosum. Getting him to understand and learn these things is one of Noelle’s goals.
Permanently Covered In Sunscreen
One of the key things for Oliver’s health is to keep him covered in sunscreen. This is a precaution that most people should take in their everyday lives when coming into contact with the sun's harmful rays. However, it becomes especially important in Oliver’s case, as this is, literally, a matter of life or death.
In consequence, Noelle makes sure he has sunscreen on at all times. Oliver is used to it since he knows no other way. After all, he was diagnosed when he was only 18 months old. Now that he’s 8, he has a better understanding of the importance of this precaution.
His School Also Went Out Of Their Way To Accommodate Him
When Noelle and Albert decided to enroll Oliver into school, they had to explain his condition. This way, they could consider changes that needed to be implemented to make Oliver’s attendance safer. This is why the light bulb in his classroom has a sleeve, as a way to protect him.
Furthermore, Oliver has grown to love school. The other students don’t think anything of his unusual attire as everyone knows about his condition by now. He can concentrate on his education instead of having to explain, every two seconds, the reason behind his unique outfit.
Living In Darkness
The first days, after Oliver’s diagnosis, were rough for the family. They even needed to get the proper technology installed on their windows to avoid UV light from entering their home. Before they were able to do so, they simply covered all light entrances around the house.
This safety measure had them living in the dark for a short period. They would open the windows but keep aluminum foil over them to avoid the sun’s glare. This shows the deep commitment the Kei family had to make sure things worked for Oliver as best as they could.
The Whole Family Now Love The Night
The entire family has gotten used to their different schedules. They really enjoy when the sun goes down because Oliver is free to take off the protective gear. He can have a lot more fun with his brothers around the house and in the backyard.
Wintertime is also an opportunity to play outside even if they have to be covered in extra layers of clothing to do so. With special shoes to avoid slipping and injury, they enjoy their time together. They’ve all become accustomed to these adjustments and now embrace them fully.
Just One Of The Boys
Playing with his brothers is one of the things that Oliver loves the most. The fact that he’s accepted at school also makes him feel like a normal boy. He doesn’t have to feel like an outsider anywhere. His outgoing nature and friendly demeanor also help him to socialize.
He even plays soccer with his brothers at night. His mom and dad bring special LED lights so that they can see what they’re doing. This is a great source of fun for them and Oliver enjoys these times immensely. Noelle and Albert are great at finding ways around Oliver’s condition.
Adults Can Be Crueler Than Children
Noelle has made an important distinction. Unlike Oliver’s classmates, some adults can be quite cruel when they first meet Oliver. They will ask absurd questions or make jokes about it being Halloween because of his special attire. This ignorance motivated Noelle to take action to prevent it.
She prints business cards explaining Oliver’s disease. Noelle often hands them out when she sees people staring or murmuring about him. She understands that this illness is not something you often read about in books, but it doesn’t mean people have the right to be rude.
Other Obstacles He Has To Push Through
Unfortunately, Oliver has other things to deal with aside from his Xeroderma Pigmentosum diagnosis. He also suffers from esophagitis, which means that he sometimes has difficulty eating due to irritation in his esophagus. Oliver also has another condition related to his gastrointestinal tract called gastroparesis.
Gastroparesis affects the movement of Oliver’s stomach muscles. This can cause him to have difficulty digesting his food and it can make him nauseous as well. Noelle and Albert make sure that he receives the appropriate nutrients despite these ailments. They are intentional about combatting everything and anything that poses a threat to their little boy.
Thoughts About Radical Changes
One of the things the Kei family has considered is moving to a place with a colder climate. Sunny California seems like the worst place for the Kei family to reside. However, Noelle also suffers from a disease called systemic diffuse scleroderma and cold weather would not be good for her.
Despite this, she has been looking at options to get her condition treated and move the entire family. However, this is a future goal and it’s not on the table for now. Besides, even if they move, they would have to keep taking every safety measure possible.
A Great Attitude Towards Life
Noelle has stated that Oliver is a constant source of inspiration. Where many kids would be frustrated and moody, he’s always upbeat and agreeable. His joy for life leads him to make the most of every moment, regardless of the limitations imposed on him by his condition in his daily life.
It’s yet to be seen how he will handle high school and the challenges ahead. However, with the support of his family and the school management, he’s sure to succeed. Oliver’s attitude towards life is an asset that will surely help him to achieve whatsoever he puts his mind to!