My naam is Ava Sothmann.Ek is 17 jaar oud en ek is gebore op
die 15 Aug 1998 in Pretoria Oos Hospitaal.
Toe ek 5 jaar oud was,was ek gediagnoseer met ‘n
baie skaars sindroom,die Machado Joseph Sindroom(MJD).Dit is ‘n sindroom
waar jou Serebellum krimp en waar jy spesifieke simptome kry(as jy my vorige
blog gelees het,sal jy weet wat al die simptome is).Die simptome wat ek beleef
is: Stadig swakheid van bene en arms,soms
geblurde visie, ongekoördineerde loop, stadige en verwarde spraak,
stadige oë beweging, erge attaksies(soms is dit baie erg,soms is dit beter,
stadige geheue verlies,sukkel met aandag,sukkel
met my belans en met die fyn werking van fyn goed.
Dit is vir my baie moeilik om hierdie te aanvaar want in die
verlede kon ek alle sportsoorte doen soos
netbal,hokkie,ballet,gimnastiek,versping ens. en toe moes ek net stop en ek het
nie regtig verstaan hoekom nie.
As ‘n kind het ek baie trauma beleef.’n Rukkie nadat ek
gediagnoseer is met die sindroom, is my Ma gediagnoseer met borskanker.Toe my
Ma gediagnoseer is met kanker,het my ouma vir ‘n rukkie hier by my,my boetie en
my Pa kom bly.
Ek was te deurmekaar
en te klein om te te verstaan wat aan gaan.So twee jaar wat my ouma by ons gebly het,was my Ma
oorlede.Dit was vir my baie erg,dit het vir my gevoel of ek my beste vriend
verloor het en ek kon nie verstaan hoekom dit met ons gebeur nie!!Ek het nie
oor my pyn gepraat nie,my ouma het my baie gevra “hoekom huil jy nooit oor
mamma nie?” en ek het gesệ “want ek moet
sterk wees vir pappa en vir boeta,want as hulle sien ek is hartseer,dan
maak ek hulle nog meer hartseer”.Ek mis my Ma nou nog baie,soms voel dit vir my
of niemand in die wệreld my so goed kan verstaan soos sy het nie!!
Partykeer voel ek of ek my kop onder die komberse wil indruk
en nooit weer uitkom nie!!!Maar ek kan vir jou sệ dat alles raak met tyd
beter,die pyn gaan nooit weg nie maar
dit raak definitief beter!!
My name is Ava Sothmann. I am 17 years old and I was born on
15 August 1998 in Pretoria East Hospital.
When I was 5 years old, I was diagnosed with a very rare
syndrome, the Machado Joseph Syndrome (MJS).
It is a syndrome that shrinks your Cerebellum with specific symptoms (if
you've read my previous blog, you will know all the symptoms). The symptoms I'm experiencing: slow weakness of arms and legs, sometimes blurred
vision, uncoordinated walking, slow and slurred speech, slow eye movements,
severe ataxia (sometimes it's really tough, sometimes better, slow memory loss,
difficulty paying attention, difficulty with my balance and the fine
performance of fine motor skills.
It is very difficult for me to accept this because in the
past I could do all sports like netball, hockey, ballet, gymnastics, long jump etc.
and then I had to stop all my sport and I did not really understand why.
As a child I had great trauma. A While after I was diagnosed
with the syndrome, my mother were diagnosed with breast cancer. When my Mother
got breast cancer, my grandmother came to stay with us for a while.
I was too small and too confused to understand what was
going on. So for two years my grandmother stayed with us. It seemed as if I had lost my best friend, I
could not understand why these bad things had happen to us!! I did not want to feel my pain, my grandmother
asked me many times why I never cry about my mom. I answered "because I
have to be strong for dad and boeta, because if they see I'm sad, then I make
them even sadder". I miss my mom so
much now, sometimes I feel as if nobody in the world can understand me as well
as she did!!
Sometimes I feel as if I just want to put my head under the
covers and never come out again!!! But I can tell you that everything becomes
better with time, the pain never goes away but it becomes definitely better!!
