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Ishan in Urdu (ancient Indian language) means “SUN.” Ishan truly is the light of our lives and center of our universe. Unlike most babies who come out kicking and screaming, Ishan came out quiet, not breathing, and blue. His fight began even before he took his first breath. After a harrowing start to life, we (his parents) were given the devastating news that
our little baby boy had a rare genetic condition. Since then, Ishan’s resume of diagnoses has grown longer. We call it the triple whammy: first, a genetic disorder (Cri Du Chat Syndrome); second, a brain anomaly (Complete Agenesis of the Corpus Callosum) and third, a neurological impairment due to oxygen loss at birth (Cerebral Palsy).
In all of his eight years, Ishan has faced hundreds of challenges and overcome many obstacles but the battle to live a “normal,” happy and healthy life continues. Due to Ishan’s “triple whammy” he is non-verbal, has moderate hearing loss, vision issues, and suffers from reflux, cognitive disabilities and muscle tone issues esp
ecially in his lower limbs. Ishan has to use a wheelchair for transportation. Despite all the things that are going against him he carries a spirit of optimism, unadulterated love, and a zest to live life to the fullest and in the now.
Ishan loves the outdoors, and is a busybody. He equally loves hiking along the variou
s Chattahoochee trails all around the metro Atlanta area, as well as walking in our neighborhood. But all this is done within the confines of his special needs stroller. (His wheelchair is suited only for indoor floors.)
During the summer all the kids in our neighborhood are riding their bikes while Ishan is stuck in his stroller. We can see the yearning in his eyes when he sees the kids pedaling away into their carefree childhood lives. Having a bike would make a world of difference to him. Despite all his disabilities Ishan has a very strong mind of his own, so his inability to control the movement of the stroller sometimes frustrates him. He prefers his wheelchair because he cans self propel, but his wheelchair cannot go over even slightly uneven surfaces. Ishan also loves to feel the wind in his face, which he cannot do while in a stroller.
From a parents’ perspective the bike will also be a fun way for Ishan to get the much needed physical exercise/range of motion for his legs. As mentioned earlier Ishan has mixed muscle tone. To combat it he has undergone numerous procedures and surgeries in his lower extremities. Ishan loathes physical therapy because it is hard, hard work. Plus he has been receiving tradition physical therapy it since he was 40 days old and now eight years later it is more of just the same. The bike would be a perfect solution to combine all the things he loves along with all the things he needs.
For instance, if he did have a bike he can be outdoors (he is very motivated to keep moving when he is outdoors); he can meet and make new friends and his legs will get stretched and exercised. It will also be a good way to teach him road safety rules and etiquette.
The reason we haven’t bought a bike for Ishan is because we cannot afford the cost of procuring one. Last year Ishan’s Dad got laid off for five months and although he did secure a job it is a “part time regular” position and the job outlook continues to be tenuous.
On a day to day basis we have a lot of out of pocket expenses, because although Ishan is deemed most in need, he has been on the Medicaid Waiver wait list for over two years. We are right now at a point that we can no longer wait for the waiver money to come through to make his to make his bathroom accessible, as it is getting very difficult for Ishan to safely use his bathroom. So now we are in the process of converting his bathroom into a handicapped accessible one. We also recently had to invest in ramps to make our main door and garage entrance accessible for a wheelchair. Currently we lift his wheelchair (which weighs around 50 lbs) in and out of our Honda CRV because we cannot afford an accessible van. Some of our everyday expenses include: a specialized diet, high calorie boosters to help maintain adequate nutrition, over the counter laxatives (daily), antihistamines (daily), special eating utensils, an array of oral motor tools to reduce his oral sensitivity, neoperene shorts with straps and a gait belt to aid in walking, and diapers, all of which are not covered by insurance.
A bike for Ishan would help him get closer to being an integral part of the community/neighborhood he lives in. And most of all it would make him feel like a kid again!
