In October 1997 Adriana "Nana" was born into

this world with a cureless gene deficiency.

 Due to the little amount of known cases

we neither received a therapy nor a projection,

but felt abandoned in a nameless universe.

 

 

 

 

 

At that time there was no such thing like a support

group in Germany. It´s been essential for us to gather information, talk to people and hear about other

children in the same condition.  Thankfully I found

the US Smith-Lemli-Opitz network, where you can find

tons of information:

 

www.smithlemliopitz.org

 

Meanwhile there is a German group as well:

 

www.slo-deutschland.de

 

 

 

 

The Child, yet unborn, spoke with the Father,

"Lord, how will I survive on the world?

I will not be like other children, my walk

may be slower, my speech hard to understand,

I may look different. What is to become

of me?"

The Lord replied to the child,

"My precious one, have no fear, I will give

you exceptional parents, they will love

you because you are special,

not in spite of it. Though your path through

life will be difficult, your reward will be

greater, you have been blessed with a

special ability to love,

and those whose lives you touch will be

blessed because you are special."

 

Unknown

 

 

Adriana was retarded, both mentally and physically.

And even though we understood the plain words

directed to us we were unable to realize the impact.

At that time I believed my life was over and in retrospect it´s been the truth. My instinct

knew I was facing a turning point and

 my life wouldn´t ever be the same.

The path has been rocky, unlimited tears have been shed, and more than once I was closer to

my limits than ever before.

But she always put me back on track and has 

taught me to take life each day at a time.

There are no words to describe how grateful I am

for the magic she brought into my life, the lessons she taught, and above all the unconditional love

I was allowed to experience.

 

 

 

You raise me up

so I can stand on mountains.

Your raise me up

to walk on stormy seas.

I am strong

when I am on your shoulders.

You raise me up

to more than I can be.

 

 Josh Groban 

 

 

What lies behind us and what lies before us

are only tiny matters compared to what

lives within us.

 

Ralph Waldo Emerson

 

 

 

Everything has it´s wonders, even darkness

and silence, and I learn whatever state I am in,

therin to be content.

 

Helen Keller

 

 

 

 

Here is my secret. It is very simple. The essential

things in life are not seen with the eyes, but with

the heart.

 

Antoine de Saint-Exupéry

 

 

 

 

Nothing is worth more than this day.

 

Johann Wolfgang von Goethe

 

 

 

 

Love has the power of undergoing all things,

having faith in all things, hoping all things.

Love has no end.

 

But now we still have faith, hope, love - these three;

and the greatest of these is love.

 

I. Corinthians 13

 

 

 

 

 

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