Seeking to bring awareness.
22-Year-old Caliph (K) was born special. You see he was born a twin. Caliph and his brother Calid brought tons of joy to the lives of their families. But K was much more special than his parents could ever imagine. K was born with a PTEN gene associated with an increased risk of certain Cancers, benign tumor growths (which is just one of his battles) & neurodevelopmental conditions.
K was diagnosed with Cowden’s Syndrome which affects each carrier differently. K suffers from Vascular and Arteriovenous (AVM) Malformations. Which also affected him with Congenital limb overgrowth discrepancy. At the sweet age of 2 years old K developed a small lump on the top of his left foot. Over the course of a year, little K’s small lump the size of a bad mosquito bite grew to the size of a large egg. We remember times of shopping for the twins dressing them in the cutest matching outfits. We were forced to purchase shoes for K and cut the top off his shoe to resemble a large flap. Hoping the shoe will not fall off his foot while at play. We spent the next 3 1/2 years in search of answers as to what was growing inside our child’s foot. Our search stretched far across the Illinois & Indiana metropolitan areas. K gained an array of physicians from Rush, Lurie Children’s Hospital, University of Chicago, Shriners as well as numerous independents. During our years of searching, no one truly had a definite answer. We trusted many and were failed by most. As time moved on K developed several other growths throughout his left lower extremity. One day K’s mom had an appointment for herself with an Orthopedic doctor. During the exam, the doctor was asked to take a look at the child’s leg. This physician grew frantic & was baffled as to why no one had removed the lump from the child’s foot. Instantly K became a new patient of hers. Soon came an MRI and the promise that she and her colleague would remove the child’s growing lump. The feeling we had was unmeasurable, it had to be heaven-sent after all these years we’ve met our guardian angel. Two weeks prior to his procedure we received a call from the doctor. She stated and I quote “My colleague & I were discussing your child’s surgery & feel if things do not go as planned, we may have to remove his foot”. Remove foot was the last word I heard her speak! I could hear her voice in my ear through the phone but nothing made sense. By now I’m sure you could only imagine the devastating blow that crushed our hearts. What do we do now? Where do we go? Who do we call? Oh God, I’m so lost! No time for the mind to rest, mom called the Radiology location where K had just had an MRI performed and requested 10 copies. The office said well ma’am you’re the parent you can have one for free. But I was in search of miracles, so 10 copies it was. I brought a cocktail table to our upstairs bedroom and placed it at the foot of the bed so I wouldn’t keep my husband up at night. I would lay in bed searching day & night. Then it was decided the top ten medical facilities to come up under his (said) conditions would receive an email of his story, and photos and we would mail the MRI to that office. Less than 72 hours we received an email from Mayo Clinic in Rochester, MN our home away from home. They took our son in with no question. Before we knew it he was assigned a Mayo Clinic number & his first appointment was scheduled on his dad’s birthday (May 21st. 2007).
As we come into the new year K’s surgery count will exceed 30 procedures. It’s a heart-wrenching time to watch a young man with only youth in numbers but, not in life events. He has no social life, social media does not count. Due to his 24/7 365 pain, I repeat 365 days 24/7 he suffers. It’s a brutal bowl to see, we can’t even fathom how he deals with it. But he’s not dealing alone. Team Kellogg is what it takes. No one in our home has days off, with his brother being one of his biggest supporters we often have to be mindful as to how his life has also been affected by his twin brother’s condition. K spends the majority of his days in an immobilized position. K is unable to leave home much due to the inability to walk. If he’s able to go out he has to use a motorized scooter or wheelchair.
We will forever support & drive forward as a team so that one day K may have a stress-free, pain-free, enjoyable life. From the bottom of our hearts Thank you for allowing us to share a piece of our journey with you & yours. And please if you are not able to donate share our child’s story on your social media platforms, church congregation, mosque, PTA meetings, employment, wherever it may go. Don’t forget to sign the Guestbook!
With Love
Team Kellogg
