First, we want to say Thank You for all of you still following our journey! We appreciate you more than you know! It can be very isolating in this boat and having your support has brought so much hope and joy to us!
These past two weeks some have jumped into our boat, bringing lunch, coffee, reaching out to give support in various forms. THANK YOU patreons!
We’ve been asked lately:
How much of Liesel’s medical, equipment and therapy bills does the Medical Aid cover?
You heard it… NILL
Since Phelan McDermid Syndrome doesnt fall under a PMB code, they cover absolutely nothing. We have and still are sending motivational letters but all they come back with is that they’ll cover OT sessions. That. Is. It. We are still pushing to get more covered and wont stop.
So what does this month breakdown look for us? This is an example of a typical month…
OT (24 sessions covered, then we send another motivational letter, otherwise R1000 pm)
ST  R1000 pm
PT.  R1000 pm
Daily Integration behavior therapy R6400 pm (these are the guys who will also be Liesel’s fascilitator at school-but more on that later)
Neurologist R1300
Optometrist R1400 (prescription lenses incl)
OAT test R4900
Freedom walker R 4300
Our average monthly expenses just on medical/therapy has been between R15000 – R20000 pm over the last 18 months! And that’s WITH a medical aid/health insurance (Discovery).
Liesel is getting bigger, needing equipment, communication tools, home adjustments (we might need to sell if we keep taking money out of the house though) etc. It is overwhelming when we sit and do the numbers – not to mention that she will never be able to live independently and we need to provide for that (life expectancy is normal with Phelan McDermid syndrome). Before Phelan McDermid syndrome, we’ve always been independent, able to help instead of asking for it…This journey has certainly taught us to say “YES” and be immeasurably grateful for support, health, the daily love and laughs we share.

About US

The purpose of Liesel’s Heroes, is to spread awareness of the rare chromosome deletion, Phelan McDermid Syndrome and help support Liesel’s extensive needs. There are only 2500 diagnosed in the world!

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