Partial monosomy of the twelfth cromosome

Patient : Looking to find more information on a genetic disorder .It involves the 12th cromosome with a missing segment at the 13.33 mark. My grandaughter is 4 and we have just been informed that she has this disorder. All we know is that it can affect the heart, eyes, speech and growth development .We are told that it is rare therefore there is not much information available. what can we expect and request as further testing and is there something we can do to speed up the waiting list to get further help. We would also appreciate any nformation regarding this condition
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