(a) For the purposes of this Act, a qualifying child is a person under 21 years of age who is enrolled in the medical assistance program under Article V of the Illinois Public Aid Code and is diagnosed by the child’s primary physician or specialist as suffering from a serious illness, as defined in subsection (b).
     (b) The Department, in consultation with interested stakeholders, shall determine the serious illnesses that render a child who is enrolled in the medical assistance program eligible for the program under this Act. Such serious illnesses shall include, but need not be limited to, the following:
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         (1) Cancer (i) for which there is no known effective
    
treatment, (ii) that does not respond to conventional protocol, (iii) that has progressed to an advanced stage, or (iv) where toxicities or other complications limit the administration of curative therapies.
        (2) End-stage lung disease, including but not limited
    
to cystic fibrosis, that results in dependence on technology, such as mechanical ventilation.
        (3) Severe neurological conditions, including, but
    
not limited to, hypoxic ischemic encephalopathy, acute brain injury, brain infections and inflammatory diseases, or irreversible severe alteration of mental status, with one of the following co-morbidities: (i) intractable seizures or (ii) brainstem failure to control breathing or other automatic physiologic functions.
        (4) Degenerative neuromuscular conditions, including,
    
but not limited to, spinal muscular atrophy, Type I or II, or Duchenne Muscular Dystrophy, requiring technological support.
        (5) Genetic syndromes, such as, but not limited to,
    
Trisomy 13 or 18, where the child has substantial neurocognitive disability with no expectation of long-term survival.
        (6) Congenital or acquired end-stage heart disease
    
without adequate medical or surgical treatments available.
        (7) End-stage liver disease where (i) transplant is
    
not a viable option or (ii) transplant rejection or failure has occurred.
        (8) End-stage kidney failure where (i) transplant is
    
not a viable option or (ii) transplant rejection or failure has occurred.
        (9) Metabolic or biochemical disorders, including,
    
but not limited to, mitochondrial disease, leukodystrophies, Tay-Sachs disease, or Lesch-Nyhan syndrome where (i) no suitable therapies exist or (ii) available treatments, including stem cell (“bone marrow”) transplant, have failed.
        (10) Congenital or acquired diseases of the
    
gastrointestinal system, such as “short bowel syndrome”, where (i) transplant is not a viable option or (ii) transplant rejection or failure has occurred.
        (11) Congenital skin disorders, including but not
    
limited to epidermolysis bullosa, where no suitable treatment exists.
        (12) Any other serious illness that the Department,
    
in consultation with interested stakeholders, determines to be appropriate.
    The definition of a serious illness shall not include a definitive time period due to the difficulty and challenges of prognosticating life expectancy in children.
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