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Fanconi Syndrome
Fanconi Syndrome is a rare genetic disorder and the life expedancy
is not beyond 9 years old.
The conditions symptoms do not allow the kidneys to flush out
the toxins that are in the body therefore poisoning the body and
bloodstream.
Other symptoms include rickets, growth deficiency and cardiac
problems in later stages, anaemia, kidney failure and anorexia.
There is no cure for Fanconi Syndrome and very few people suffer
from this condition, it is thought to be hereditary though can
be caused with out of date drugs whilst the child is being carried
in the womb (this is mainly sufferers that were conceived during
the 60's/70's).
The condition mainly affects people from ethnic groups or backgrounds.
For more information:
www.wrongdiagnosis.com
www.emedicine.com
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Donna Marie was born on the 9th August 1969, and from birth Donna
and her family lived with her condition without knowing what was
wrong. Eventually, at the age of 9, Donna was diagnosed with a
very rare genetic disease called Fanconi Syndrome which can lead
to bone disease, problems with growth and kidney failure, the
latter two were two of the main symptoms Donna suffered with.
Donna fought against her condition, and in doing so she became
an inspiration to all around her.
Donna displayed amazing strength of character even right up to
the week she died, the determination to survive that is evident
in most children and young adults was present in her personality
and never complaining about her pain, showing an interest in other
people that was genuine was one of her best attributes as a person.
When people often asked her about her illness she would often
reply 'I'm ok, but more importantly, how are you?'.
On the I3th May 1999 at the tender age of 29, Donna or mouse as
she was known to her family passed away at home, surrounded by
her family. As anybody suffering loss will know, her passing left
a hole in the lives of those she left behind. Donna in her 29
years had met and inspired others, touching the lives of those
around her with her love and zest for life.
She had met and helped orphans dying with Aids in eastern Europe
and had touched the heart of a princess - the late Princess of
Wales, in a touching letter to Donna Marie and her family she
wrote that she was concerned to learn about Donna and passed on
her best wishes, and hoped that she would continue to fight against
her illness and while she did, she would be an inspiration to
those around her.
This extract has been taken from a personal letter of her life.
Pieces have been missed out due to the personal nature of it.
'God has changed my life so much..... From birth I have had a
rare kidney disease (Fanconi Syndrome) and have always been a
sickly child, for months I would be in hospital, in fact Leighton
(local hospital based in Crewe, Cheshire) was my second home.
From the age of nine onwards I went through a lot of pain and
suffering. My parents during this time were everything to me.
Life for me was difficult, I couldn't do what other children did,
and I tried to keep up with them but didn't really succeed.
My illness always seemed to be in the way, I was small and somewhat
fragile, sometimes not being able to walk, I would have to be
carried. When my illness would take its toll, it would become
hard for me to breathe, my tongue would feel like I was choking,
my eyes would feel tight and heavy and become very small.
I would feel sick, my hands would become paralysed and I could
feel lumps running down my arms into my hands and the pain would
be unbearable. I would have tingling sensations in my hands, feet
and face. There were times when my feet would feel numb, but this
I never told anyone, as things were bad enough.
I was very thin and stick-like barely weighing 2 stones and my
height wasn't any better at 3ft. When I hit my teens I really
felt like some kind of freak, I looked like a child and felt trapped
in my small body, girls of my age were wearing heels and were
developing, me, I couldn't fit into a pair of heels and doctors
said there was no chance of me ever developing, so I felt that
I was forever to remain a child.
By and by I always felt inferior to my own age group. People thought
that as I looked so young my brain must be that way too, often
when I would walk down the street, people would stare at me and
no wonder, my face would be plastered in make-up in an attempt
to appear older, their stares would have me in tears.
The doctor said I needed a transplant but even if I did I would
die anyway... When I heard this I felt numb but worst of all was
when my mother's eyes filled with tears, she looked so sad it
made my heart break, I was truly scared but I put on a brave face
because I didn't want my family to worry especially my dad as
he now has a heart condition.
Jesus will help me to be the way he wants me to be, of this I
am sure... This is just a small part of my testimony but I haven't
time just yet to complete it'
Donna died a few years later, her faith and determination still
as strong.
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