To Veeti - Our little INCL warrior -

ABOUT INCL:

INCL is also known as Infantile Neuronal Ceroid Lipofuscinoses or Santavuori Disease is a form of NCL and inherited as a recessive autosomal genetic trait. The disorder is progressive, degenerative and fatal, extremely rare worldwide with approximately 60 official cases reported by 1982, perhaps 100 sufferers in total today but relatively common in Finland due to the local founder effect.

The development of children born with INCL is normal for the first 8-18 months, but will then flounder and start to regress both physically and mentally. Motor skills and speech are lost, and optic athropy causes blindness. A variety of neurological symptoms, such as epilepsy and myoclonic seizures, appear. The senses of hearing and touch remain unaffected, and sufferers have been known to enjoy music. The average lifespan of an INCL child is 5-10 years.

Treatment is limited. Drugs can alleviate the symptoms, such as sleep difficulties and epilepsy. Physiotherapy helps affected children retain the ability to remain upright for as long as possible, and prevents some of the pain.

Recent attempts to treat INCL with Cystagon have been unsuccessful.

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Veeti is son of my cousin. He's very important to me and all our family. We love him so much no matter what he have to go thru!

Veeti's now 3 years old, but he's not like others in that age.. He will never be.

(Watch in High Quality)

Category:

People & Blogs

Tags:

• Veeti
• INCL
• warrior
• deathly
• ill
• baby
• boy
• Infantile
• Neuronal
• Ceroid
• Lipofuscinoses
• Santavuori
• Disease
• love

[karkkiliininam]

vaik en poikaa tunne ni tuli tippa linssiin :')

[TerachiShinya]

Valitettavasti Veeti ei sitä oo enää. :( Se ei enää istu ilman tukee eikä sitäkä kunnolla ja sitä letkuruokitaan, se ei puhu ja on jo melkein kokonaan sokee. :'(

[Eriqa98]

=((((( veeeetii<3<3 =(

[FunLittleQueen]

Veeti, such a Sweet, adorable & Gorgeous Baby Boy, always in my prayers <3

[KHAOSSHUFFA]

To VEETI, INCL WARRIOR!!!!!!!!!!! May his LIFE BE LONG AND PROSPEROUS!!! TO VEETI!!!!

[XDinexitaXD]

This is just so sad.

I am always thinking about your little cousin, Noora.

~ He loves you, I am sure, however, we can't say it but he feels it ~

Always by his side <3

[xOnceUponAMemory]

Aww Noora :(

I hope he has the best childhood he can <3.

[rose2812]

Wow preciOus baby boy i love to see your face by your protecting Noora on msn :)

You are in my prayers , cute babe :)