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Blake Dell'Aringa - Batten's Disease

NAME: Blake Dell'Aringa
SEX: Male
COUNTRY: USA
AGE: 6
DIAGNOSIS: Late Infantile NCL (Batten Disease)

Please go to http://www.blakespurpose.org/ to visit Blake's blog.

REASON FOR COMING FOR TREATMENT:  

Blake was born on 2002 as a normal healthy boy. At the age of 3 he started to show signs of speech delay and at the age of 4 he started to have seizures, head drops and lose of balance.

On June 2006, Blake was diagnosed with Late Infantile NCL (Batten disease), a genetic disorder occurring primarily in children, which, due to a missing gene, causes sudden, rapid degeneration to the nervous system and always ends in premature fatality, often between the ages of 6 and 12.

After being rejected from one of only federally authorized Cell Therapy trials in the State of Oregon, Blake's parents decided to bring him for Cell Therapy treatment in Beijing, China.


BEGINNING OF TREATMENT: Oct 13rd, 2007


CONDITION BEFORE TREATMENT:

See Videos: before1, before2, before PTOT

From March 2007 Blake experienced a drastic and swift deterioration in his motor and cognitive skills.
He lost his eye sight completely; he did not speak and was unable to walk any longer. He had to be fed via a feeding tube and was rapidly losing control of his muscles.

Before coming for treatment Blake could not lift his head, could not hold himself straight while sitting or turn over on his side while lying down.
His fingers were spastic and clenched; he could no longer use his hands and arms and had very poor coordination.
He had difficulty chewing and swallowing and was drooling frequently.
Blake became less and less responsive and aware to the people around him, he did not respond to commands; he had stopped smiling and crying.


AFTER TREATMENT:

See Videos: after1after PTOT

Few weeks after the beginning of the treatment Blake started to show improvements:

The first apparent change was that Blake became much more active and alert; he started to gain some control on his arms and legs which became more relaxed, and his coordination improved significantly, he could now clap his hands which he couldn't do before and his general fine motor skills improved.

Toward the end of the two months treatment, Blake was able to sit unsupported, he was able to lift his chest, hold his head up and lift his arms above his head.  His neck and waist control improved significantly. His fingers were less clenched and he could now grasp a small object with his right hand.

Blake's drooling was reduced and he could now swallow and chew better than before.

Blake was becoming more vocal, trying to make new words, and saying the few words that he could say loudly and more clearly than before. He became more responsive to simple commands, and was able to express 'yes' and 'no'.

Blake showed significant emotional improvements, he was much more alert, smiling and laughing more often. Blake cried, for the first time in a year, during physiotherapy class.

Reaction to light examination showed that he has occasional light perception.


On December 5, 2007, 2 days after Blake returned home from Beijing, his mother, Dawn, who hasn't seen him for two months, is writing in his Blog:

"......I have noticed several changes in him; His hands prior to leaving were spastic and very clenched so he lost the function of them along with his arms. Now they are unclenched and no longer spastic at all!!! He has his grip back and is clapping his hands and even trying to throw the ball to me. His neck and trunk control has drastically changed. Prior to leaving we could get him to hold his head up about 40% of the time but always had to coax him to do it. Now I would say since he has been back he is holding it up 90% of the time. He stood and held onto the wall yesterday with no support for about 20 seconds. While Jeremy was in the shower we brought Blake up to the bedroom and he sat indian style on the floor the whole time unsupported. Cognitively is even the most impressive change. He is so alert and smiling and trying to say so many things. I haven't noticed any vision improvements as of this time."


December 12, 2007:

"Last Friday Blake started the therapeutic horseback riding again and they actually had him scheduled to have a rider because prior to the treatment Blake couldn't sit up and they couldn't even hold him up and he was lying forward on the horse. I told them I thought he was going to do great and as you can see from the picture he did. Everyone was amazed at how great Blake looked."

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