Khales Krusade
$170 raised
3% of $5k goal
3 contributors
3 Years running
Khale's Story: Khale was born in May 2011 with multiple bone deformities, missing bones and missing digits. At 3 months of age he suffered an unexplained seizure. Shortly after, Khale started becoming sick frequently and was not able to fight ...

Khale's Story:

Khale was born in May 2011 with multiple bone deformities, missing bones and missing digits. At 3 months of age he suffered an unexplained seizure. Shortly after, Khale started becoming sick frequently and was not able to fight off illnesses as a child normally would. He was constantly getting pneumonia and even contracted whooping cough twice in 7 months even though he was vaccinated. Taking him out in public would render him ill each time. By age 6 months he had a dozen specialists monitoring his care. October 2011 his growth became and issue as he started dropping off the growth curve, eventually ending up at the ZERO percentile.

By October 2012, Khale's health was declining so much, he now was home-bound. At this point, everything he eats comes back out and he is rapidly losing weight.

November 2012, Khale was diagnosed with yet another extremely rare, terminal bone marrow failure disease called Shwachman-Diamond Syndrome(SDS). Shwachman-Diamond syndrome (SDS) is a rare autosomal recessive disorder characterized by exocrine pancreatic insufficiency, bone marrow dysfunction, leukemia predisposition, and skeletal abnormalities. Prognosis for individuals with the disorder is uncertain. Because Schwachman-Diamond syndrome was described relatively recently, limited data are available regarding follow-up in these patients. This disease is responsible pancreatic failure/insufficiency, bone deformity of tibia, lack of growth plates in left leg, neutropenia, immune deficiency, failure to thrive, asthma, lung problems, malabsorption and Khale will most likely never grow taller than 4 feet. This disease is so rare there are only a handful of doctors in the USA who are capable of treating him. 

Khale continues his fight with a basket full of meds each day. In April 2013 he had a feeding tube placed in his stomach and is 100% gtube dependent. He also had another surgical procedure done called a Nissen Fundoplication. Home nursing also began.

Top doctors in the country are still working on genetic testing and studies to fully be able to diagnose and treat Khale.

***February 2014: Khale is in Bone Marrow Failure and the process for Bone Marrow Transplant has begun. We fly out to Seattle again in March to meet his transplant team****

***February 2014: Khale has been selected as a Make-A-Wish recipient***

His team of specialists include doctors from:
Minneapolis, Minnesota; Madison, WI and Seattle, WA. 

These are the following doctors Khale has in Wisconsin, Minnesota ans Seattle....Hematologist/Oncologist(3), Immunologist(2), GI(3), Biochemical Geneticist, Metabolic Geneticist, Bone Deformity Geneticist, EDS Geneticist, SDS Geneticist, Orthopaedics(2), Neurologist, Endocrinologist, Nutritionist, Hand Specialist, Pulmonologist and a handful of therapists for different areas.

Here are some of Khale's diagnoses:

Shwachman-Diamond Syndrome(bone marrow failure disease)

Fibular Hemimelia
OligoSyndactyly 
Pancreatic Insufficiency
Neutropenia 
Failure to thrive
Autism Spectrum Disorder
Sensory Processing Disorder
Hypermobility
Confusional Migraine
Short Stature
Iron Deficiency
Gastric Accommodation Issue
Motility issues 
Rashes
Swallowing Inconsistency 
Small Cells 
Lack of Bone
Missing growth plates
Recurring Pneumonia 
Curved Tibia
Malabsorption 
Bone Deformities 
Genu Valgum 
Asthma 
Fused Bones
Caved Sternum


You can also follow his story and updates on facebook 

www.facebook.com/khaleskrusade

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