When my child was diagnosed with Spinal Muscular Atrophy (SMA) early this year after a lengthy investigation - I couldn't praise the neurology nurse Jodi's quick thinking and proactive action to speed up the paperwork process so that my child could start receiving Nursinersen as soon as possible. With a progressive disease like SMA, time is essentially an essence as delays in the treatment means we would've lost valuable time and eventually loss of muscles that can never be regenerated.
Jodi spent more than a hour with us explaining everything in details while giving us plenty of time to digest the information and allowed us to ask questions. We couldn't be more grateful in her.
Our child has received 3 nursinersen injections. On each procedure Jodi was there from the beginning to the end making sure everything ran smoothly. For a toddler the whole process could be traumatic, but Jodi managed to gain our little one's trust, so that by the third procedures our toddler was very comfortable and happy. Our child even looked forward to seeing Jodi again.
Grateful is an understatement in describing our feelings towards her. Her role in this treatment is irreplaceable. For someone at our toddler's age to have continuity seeing the same nurse & doctor is very important in maintaining successful procedure. What's more important is that Jodi cared about our family as a whole and always made us feel at ease. Her expertise and knowledge in this particular area is an asset to the hospital to make sure no error is made in each procedure considering each dose is such an expensive one.
After the first treatment my husband & I couldn't believe at the level of dedication Jodi gave to the program. We spoke so highly to our family & friends at the level of excellence the nurses and doctors give at PCH. We've never seen this kind of practice in any other hospitals in WA where we felt we were treated as a person not a statistic.
Would be a great loss and shame to the whole program if her role is to be discontinued.
"My child is receiving treatments at Perth Children Hospital (PCH)"
About: Perth Children's Hospital / Neuroscience and Neurology Perth Children's Hospital Neuroscience and Neurology Nedlands 6009
Posted by Grateful mom (as ),
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