iamviable campaign #255

iamviable campaign

Our son Khale was born May 12th, 2011 with a rare condition called Amniotic Band Syndrome (ABS). While in utero, he became tangled in sticky strands of amniotic fluid. As he grew, those bands restricted blood supply & hindered growth. The bands eventually became so tight, it naturally amputated some of his toes. Along with that, two of his remaining toes are fused together. The foot & whole leg is smaller in length & girth than the other leg. In his 1st round of xrays it was revealed he no longer has the metatarsal bones in the middle of his foot. The doctors believe they were reabsorbed into his body after the toes fell off. In addition, he does not have an established heel; which means there is no bone in his heel & the ankle bone is fused. He sees top experts at Shriner’s Hospital in Chicago for this condition. He has his next appointment is June 1st, when they will fit him for a brace & determine the surgical options we have.

In October 2011, Khale’s health began to decline rapidly. He was diagnosed with severe bilateral pneumonia and RSV. He then developed severe asthma & other lungs problems. Over the next few months, we had weekly visits to the doctor & hospital. He was choking while eating, his eating declined & he stopped gaining weight. After numerous appointments with multiple specialists, he was diagnosed with a swallowing inconsistency & failure to thrive. In order for him to gain & maintain a healthy weight he must take multiple medications daily. For all of this, he is being treated by specialists at Childrens Hospital in Milwaukee; a Pediatric Pulmonologist, Nutritionist, Pediatric Gastrointerologist & Speech Pathologist.

Update: Khale has made tremendous progress & his taking steps on his own! His body is compensating for his loss making it possible.We were told he probably wouldnt stand alone…he DID. We were told there is a high probability he will not walk without surgery & a race…he IS!

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  1. I love my baby Khale with all my heart! The first 6 months of his life I pretty much cried the whole time. I didnt know what to do or what to expect. I was scared, confused, angry & just an emotional wreck. Once he started doing more things the same as any other baby, I started to feel some relief and felt life things would be ok. Afterall, he is ALIVE & VIABLE. He is such an inspiration to me and so many others. Thank you Khale for changing our lives!

    I love you monkey!

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