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Meet Kaleb!
Kaleb is a handsome three-year-old little boy that is full of life and love. Doctors diagnosed this sweet boy with an extremely rare disease called Frontotemporal Pachygyria. It is so rare, that statistics say 1 in 200,000 persons are affected with this heart breaking disease per year. Kaleb has been fighting all his life to reach small milestones that most children reach on their own naturally.
Some information about pachygyria:
•Pachygyria is a developmental condition due to abnormal migration of nerve cells (neurons) in the developing brain and nervous system.
• With pachygyria, there are few gyri (the ridges between the wrinkles in the brain), and they are usually broad and flat.
• The condition is also known as “incomplete lissencephaly”.
How does this affect sweet Kaleb?
Pachygyria may occur alone or as part of various underlying syndromes and can be moderate to severe. The latter is the case with Kaleb. His symptoms includes global developmental delay, poor muscle tone and control, feeding and swallowing difficulties, and small head size (microcephaly). Kaleb also has unconfirmed case of quadriplegic cerebral palsy.
We are a young family of three. His father is the sole provider working two jobs to support all the home and medical bills. I am his mother. I have had to resign from my job and be a full time mommy and caretaker for Kaleb. I spend most of my days tending to him and making sure his needs are met and trying to ensure that he would learn to be as normal as the next kid.
Kaleb is currently enrolled in speech therapy, occupational therapy and play therapy. I had to stop his physical therapy treatments as the bills are stacking up. However, I do continue to be proactive in what I have learned over the years with him at home. Some of the tools that he has used to assist in his progress are homemade crawling devices and standing and sitting devices.
Kaleb is only now starting to get stronger physically. All the wonderful therapists who treat him are advising that now is the most appropriate time for him to get into advanced deep stimulation intensive therapy, to start to get him moving forward and begin the process of gaining some independence like balance control, sitting unassisted and crawling. This treatment, unfortunately, is not available in Trinidad.
I have started this fundraiser in hopes of getting enough caring hearts to aid in Kaleb being able to go to Smile Therapy for Kids in Canada for treatment. The intense therapy dates span over three weeks from April 27, 2020 to May 15, 2020 for three hours per day. (Please note that these are the dates that are available as they are hugely booked in advanced.) This cost is $360CAD (Canadian dollars) per day totaling $5400CAD which equates to $27,710.00TTD or just under $5000US.
Kaleb has had countless days of therapy in his life and countless ahead. This has put us in a financial constraint as no insurance covers Kaleb’s needs. My prayer and hope is that you, who are reading this, would be willing to donate anything at all to his cause, and if not I appreciate you sharing this to support the cause for Kaleb’s bright future ahead.
Thank you.
Sincerely,
Kayla Bhoncharan,
(A hopeful mom!)
Kaleb is a handsome three-year-old little boy that is full of life and love. Doctors diagnosed this sweet boy with an extremely rare disease called Frontotemporal Pachygyria. It is so rare, that statistics say 1 in 200,000 persons are affected with this heart breaking disease per year. Kaleb has been fighting all his life to reach small milestones that most children reach on their own naturally.
Some information about pachygyria:
•Pachygyria is a developmental condition due to abnormal migration of nerve cells (neurons) in the developing brain and nervous system.
• With pachygyria, there are few gyri (the ridges between the wrinkles in the brain), and they are usually broad and flat.
• The condition is also known as “incomplete lissencephaly”.
How does this affect sweet Kaleb?
Pachygyria may occur alone or as part of various underlying syndromes and can be moderate to severe. The latter is the case with Kaleb. His symptoms includes global developmental delay, poor muscle tone and control, feeding and swallowing difficulties, and small head size (microcephaly). Kaleb also has unconfirmed case of quadriplegic cerebral palsy.
We are a young family of three. His father is the sole provider working two jobs to support all the home and medical bills. I am his mother. I have had to resign from my job and be a full time mommy and caretaker for Kaleb. I spend most of my days tending to him and making sure his needs are met and trying to ensure that he would learn to be as normal as the next kid.
Kaleb is currently enrolled in speech therapy, occupational therapy and play therapy. I had to stop his physical therapy treatments as the bills are stacking up. However, I do continue to be proactive in what I have learned over the years with him at home. Some of the tools that he has used to assist in his progress are homemade crawling devices and standing and sitting devices.
Kaleb is only now starting to get stronger physically. All the wonderful therapists who treat him are advising that now is the most appropriate time for him to get into advanced deep stimulation intensive therapy, to start to get him moving forward and begin the process of gaining some independence like balance control, sitting unassisted and crawling. This treatment, unfortunately, is not available in Trinidad.
I have started this fundraiser in hopes of getting enough caring hearts to aid in Kaleb being able to go to Smile Therapy for Kids in Canada for treatment. The intense therapy dates span over three weeks from April 27, 2020 to May 15, 2020 for three hours per day. (Please note that these are the dates that are available as they are hugely booked in advanced.) This cost is $360CAD (Canadian dollars) per day totaling $5400CAD which equates to $27,710.00TTD or just under $5000US.
Kaleb has had countless days of therapy in his life and countless ahead. This has put us in a financial constraint as no insurance covers Kaleb’s needs. My prayer and hope is that you, who are reading this, would be willing to donate anything at all to his cause, and if not I appreciate you sharing this to support the cause for Kaleb’s bright future ahead.
Thank you.
Sincerely,
Kayla Bhoncharan,
(A hopeful mom!)