The gentle rustling of leaves created a soft melody, carried on a light breeze that whispered secrets of unending serenity. Under the shade of a towering orange tree, Temmy and Josh, vibrant kids of age six(6) found themselves engrossed in a play game of tag.
Their laughter echoed through the air as they dashed through the grass; then they paused for a moment to catch their breath, Temmy noticed something about Josh's foot that sparked her curiosity. Her eyes widened with genuine intrigue pointing to his foot, "Josh why does your toe look different". It's God's gift Josh replied, since that was his mom reply when he asked her.
Sunlight filtered through the delicate lace curtains, casting a warm and ethereal glow upon Josh room. He yawned and stretched, oh it's morning he exclaimed, his fingertips brushed against and unfamiliar lump at the back of his neck, causing a surge of curiosity and concern. His tender heart skipped a beat as he stood in front of his mirror, inspecting the lump.
Mom, Dad, come see what is in my neck he shouted running towards his parents room. His parents carefully inspected the lump,does it hurt? Yes mom, Josh replied amidst sob. Don't worry we would go see the doctor together, her voice was filled with love and reassurance.
*
The doctor examined the lump, asking questions and carefully listening to their explanations. After thorough examination and biopsy, he was diagnosed of Fibromatosis (a type of benign tumour). How can it be treated? Josh parents asked. He will undergo a surgical operation to remove the tumour and he will be fine afterwards the doctor explained.
The surgery was successful, Josh was back to his normal life. At age 10, he was able to discover his interest; he loves writing poems. He wrote a poem which portray about friendship to Temmy; a close friend of his since age two(2).While reading the poem Temmy was overjoyed, Josh what will you love to be in future, Temmy asked. I would love to become a poet and writer he replied, what of you? I would love to become a medical doctor, Temmy said. Meanwhile Josh parents have been eavesdropping the kid conversation and they marvelled at the kid dreams.
The lump which was surgically removed has healed leaving behind a bone growth. But there was still a mystery which was yet to be unravelled. His spine started having unusual curve (scoliosis), he found it hard to breath, his jaws seemed fused making him bit himself accidentally, his joints where fused making mobility (movement) difficult. He was rushed to the hospital, he was examined and diagnosed of Juvenile Idiopathic Arthritis(JIA);it is characterised by chronic inflammation of the joints, leading to pain and stiffness. Josh parents were not satisfied with the diagnosis, they consulted an orthopedist which a family member had referred them to.
They booked an appointment with the doctor. After describing the ordeal Josh was battling with, the doctor examined his malformed toe, and did a X-ray which led to the discovery of extra bone growth in the jaw,leg (osteochondromas) ,ribs and neck. The result shows your son is suffering from Fibrodysplasia Ossificans Progressiva (FOP) Dr. Kaplan exclaimed. Please doctor what is it? Josh parents asked fearfully. Dr. Kaplan looked at them pitifully, so sorry sir/ma, your son has been misdiagnosed for years due to the rarity of his condition.
Fibrodysplasia Ossificans Progressiva (FOP) also known as Stoneman Syndrome is a rare genetic condition in which the body makes extra bones in location where bones should not form. Extra bones develop inside muscles, tendons, ligaments, and connective tissues. In a sense, people with FOP have an extra skeleton.It affects one in two million people.
A malformed toe which is present at birth and inflammed swelling typically on the shoulder and back (flare-ups) are the first sign of FOP. These flare-up can lead to the formation of new bone. Please doctor what causes it? Josh parents asked fearfully. It is caused by a mutation in the ACVR1 (Activin Receptor Type 1A) gene, the cause of extra bone formation is still yet to be unravelled by scientists/researchers. How can it be cured? Josh asked with a shaky voice, presently there is no cure for FOP but the symptoms of flare-ups ( swelling,inflammation,and pains ) can be controlled with a short-term use of high dose corticosteroids (such as prednisone) and cox-2 inhibitor. Can't surgery be performed to remove the extra bone formation, Josh mom asked. That is life-threatening and shouldn't be considered because it will lead to more robust bone growth which will worsen the condition, the doctor replied. When will the bone growth finally come to an end, Josh father asked. Unfortunately, FOP does not improve overtime, the P in FOP stands for "progessiva" which means that FOP will progress or get worse, as a person ages because it is part of the genetic make-up of an individual, the doctor replied.
Clutches were recommended for Josh to aid his movement. Simple tasks that he once took for granted became insurmountable challenges for him.The pain was a constant companion, a reminder of the cruel fate that had befallen him. At his leisure he wrote a poem he titled "FATE"
In the tapestry of life, a thread so fine, Weaves the story of our fleeting time. A force unseen, a guiding hand, Fate's gentle touch, like shifting sand.
It whispers softly in the wind's embrace, Guiding choices with its subtle grace. Through Fate, in its wisdom, can be unkind, A cruel master, with secrets it binds. It tests our spirit, with trials and pain, Forcing growth, like drops in the rain.
But do we surrender, to fate's decree? Or rise above, shaping our destiny? For in the choices we make, the paths we choose, Fate intertwines, with our own muse.
With every step forward, we carve our way, Guided by fate, as night turns to day. Yet, we hold the power, to shape our tomorrow, To forge our own path, amidst joy or sorrow.
To be continued...
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