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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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