Meet

Angel

Angel is 13 years old and has a twin brother.
At birth she was born an amazement and bewilderment to the hospital doctors.She was 4 different colors.Her complete left side was grey
Her toes and fingers purple.Her stomach and around the mouth were blue
and she has this strange paleness to her face and neck.
For a year she was treated for stomach disorders heart disease and unknown seizures that doctors could not understand.
Sound would set off these seizures and she was places in a quiet room to be slowly introduced to noises such a dogs barking, phones ringing, car horns etc.

At age 2 she developed a cyst on her neck.When Biopsied it shown to have rib tissue in it and then her doctors knew what she had.
Along side other internal defects she was diagnosed with Aicardi.

To sum it all up
she is missing 30%brain(agenisis corpus collusum ,petitary,hypothalumus,cordid and another i cant spell)
60% heart corrected through surgery
10% stomach and numerous muscles and nerves
throughout her legs from knee down.
She is non mobile non verbal and both physically and mentally delayed.

Despite all this Angel is a very happy person and quite intelligent.
She loves birds and music.
She has 2 small birds she loves to watch in their cage and will sneak
her bread outside to throw to the wild birds.
She plays her music by ear and is quite good.
She gets every note correct that I can see…(I Took music lessons
as a child)
She uses American sign for communication and has developed her own
sign language.She is non verbal but one repeated sound I hear often when she feels compromised is MOMMA!
She uses that fluently and some verbal ques for yes or no.

Angel is an inspiration and encouragement to everyone she meets.
She doesn’t give up easily and despite all that appears wrong…
Her life is perfect.She complains for nothing and is always striving for higher goals.
Thank you
Angel’s mother
love

1 thought on “Angel”

  1. Susan Lady-Hagerstrom

    Thank You VERY much for your story was SUCH an inspiration for me. I am very new to this rare disorder. I have a 3 month old granddaughter that was born with Acardi . Your daughter’s name “Angel” is perfect for her. Thank You Again, Susan/Florida

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