My daughter

Hi,

I want to share with you the story of my daughter. Now she’s 12 years old.

The pregnancy and the birth were normal. She was born at full term with the weight of six pounds and 5 ounces. She began to walk at 13 months but she fell often while walking. When she was about 24 months we had the impression she could not run. Her orthopedist told us everything was O.K. At the age of five years we saw that while walking she shaked her haunch. An X-ray of her bones was read as normal but her muscles were weaker than normal.  It was recommended she takes gymnastics or dance. Two years she trained Artistic Gymnastics.

She began to talk at the age of  24 months but a little bit babylike. Later she worked with a specialist and all was compensated. The orthopedists told us that she also had problem with her fine motor skills but with the growth everything will be fine.

The big problems began when she was 10 years old. She grew tall fast – for about two-three months she became taller with 20 centimetres. She was 148 centimetres tall and weighed 55,1 pounds. She began to get tired very easily -  going up the stairs was difficult for her. She started folding her legs by the kneels, one of her feet bent inside and the toes also folded up.  Her limbs, the fingers and toes grew even weaker and longer.  Her speech became difficult.  Now she can’t squat.  The experts gave us a lot of scary diagnoses and syndromes but all the examinations showed that these diagnoses to be wrong.  DNA examinations of the mother, the father and the child in our country Bulgaria and in Belgium found nothing wrong.

An MRI of her cerebrum was normal. We made also examinations of amino acids.  She only has lower speed of leading of peronaeus dust and peronaeus proximal with saved reflexes and distended zones.

After two years working with a kinesitherapeutist has brought a little bit of improvement.

Some of the doctors say that everything will be fine while growth but if it won’t be fine?

Another detail for my daughter is that she doesn’t have tears, she cries but without tears. She has optic nerve atrophy but normal mobility of her eyes. She has a non-specific long facial skull and high palate. Her heart  is normal as is her intellect.  Since she was a baby she has had colitis and anemia. She can ride a bike but when walking, if there is unveness, she sometimes falls down.

I write you because there are some resemblances (despite the differences) between my daughter and yours. I really want to find what’s the cause for the state of my daughter, so I would know how can i adequate help her.

Yours faithfully,

Stefan Petkov

Bulgaria, Sofia

Petur Velichkov Street №57

+359888571591

shenairco@yahoo.com