Please help kaleb

34953056_154411867653809_r.jpegOn November 6th our world has changed forever. We got tragic news about kaleb and everyone has been heartbroken. I’m doing this for costs back and forth to Vancouver and I want his one last wish to come true as his diagnosis is terminal.

kaleb is one of the sweetest most polite little boys this is so unfair our world has shattered into a million pieces. He has requested to go to Disneyland and I’m gunna do my best to make it happen.

here is some info On what he has. 1 and 100 000 kids get and god gave it to him so far 50% of kids that have this don’t live past 18 months old kaleb is 4.

X-linked myotubular myopathy is a condition that primarily affects muscles used for movement (skeletal muscles) and occurs almost exclusively in males. People with this condition have muscle weakness (myopathy) and decreased muscle tone (hypotonia) that are usually evident at birth.

The muscle problems in X-linked myotubular myopathy impair the development of motor skills such as sitting, standing, and walking. Affected infants may also have difficulties with feeding due to muscle weakness. Individuals with this condition often do not have the muscle strength to breathe on their own and must be supported with a machine to help them breathe (mechanical ventilation). Some affected individuals need breathing assistance only periodically, typically during sleep, while others require it continuously. People with X-linked myotubular myopathy may also have weakness in the muscles that control eye movement (ophthalmoplegia), weakness in other muscles of the face, and absent reflexes (areflexia).

In X-linked myotubular myopathy, muscle weakness often disrupts normal bone development and can lead to fragile bones, an abnormal curvature of the spine (scoliosis), and joint deformities (contractures) of the hips and knees. People with X-linked myotubular myopathy may have a large head with a narrow and elongated face and a high, arched roof of the mouth (palate). They may also have liver disease, recurrent ear and respiratory infections, or seizures


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Cathy Little 
Nanaimo, BC
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