"...we can see changes in him , they may seem small to others, but to me and I’m sure even to Danilo they are big step."

Danilo's Story: Spastic CP

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Danilo by his mother

Spastic Quadriplegia Cerebral Palsy 

Danilo and his twin brother were born prematurely at 29 weeks in Bologna – Italy.  He was not breathing on his own so he was incubated, two years later I was told he had severe brain damage.  There was no hope and not much of a future for him.  After two months in ICU he was sent home weighting only 1,750 kg.

Frustration

I felt that Danilo was just another number to add to the statistics of babies who survived a prem. birth – now it is the family to take over and deal with all the problems and suffering that will soon start.

In fact, over the next 18/24 months Danilo was diagnosed with:

Spastic Quadriplegic Cerebral Palsy

C.V.I. (Cerebral Vision Impairment

Infantile spasms

West Syndrome

Reflux

and all they gave was 1 hour (twice a week) of therapy.  We did not need a medical degree to know this was not enough for Danilo.  Therefore, like many other families with brain injury children we started looking /doing alternative therapies.

TST

When we saw and read about the TST method at the Advance Centre we finally saw that someone was taking this problem seriously.  Linda showed us how important it was to first develop a healthy respiratory system.

After 1 year  - a big step forward

We came to advance in August. It’s almost a year now that we are doing the TST. It’s a  long and slow progress as Danilo has so many problems but we can see changes in him , they may seem small to others, but to me and I’m sure even to Danilo they are big step.

Danilo has more head control

His shoulders are open not all closed into himself

He has a flatter chest, wider ribcage

His speech, yes we are starting to communicate and understand what he is saying. (Danilo understand English and Italian) and he continues to surprise us daily with his words.

He can sit in the crossed leg position for longer and is also starting to use his arms to help with his balance.

He loves to slither all over the place and is so determined to get to where he wants.

He can now lean on his forearms and is trying to get into the crawl position.

Our journey has just begun and we know he has a long way to go still ( Strong muscle tone as he grows older) – but we will take each step together and try our best to improve his condition.

 

“TST can make a difference”

Symptoms

Body Function
Body control
Crawling
Limb Control
Movement
Sitting
Speech/Voice
Words
Body Structure
Communication

Conditions

Epilepsy
Spastic CP
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