Parent Stories - Alice (Sturge-Weber Syndrome)

Ten-year old Alice was born with Sturge-Weber syndrome, a congenital disorder involving the brain, skin and eyes. This is the story of a family and their experiences in caring for a disabled child.

For more information on Sturge-Weber syndrome, please visit the Contact a Family directory: http://www.cafamily.org.uk/Direct/s63.html

If you would like any information about specific conditions or rare disorders, you can access the Contact a Family Directory here:
http://www.cafamily.org.uk/dirworks.html

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Category:

Nonprofits & Activism

Tags:

• family
• disabled
• children
• charity
• support
• community
• wisdom
• Sturge
• Weber
• syndrome
• congential
• disorder
• rare

[xpaazx]

I have this syndrome, and all that...

But i have a normal life. :)

God bless Alice,

(sorry my english sucks!)

[pris72]

I have KTS, and I do believe this girl Alice was diagnosed correctly as having SWS.

KTS in almost all cases only affects lower limbs. There are rare cases of it involving the upper extremities, but not often.

[Panhypopituitarism]

aww bless

i have a rare condition aswell

its my name

am 15 but only act 10 and look 10

god bles your family xox and her

[annamaria96]

keep up the good work, God bless You

[txstoryteller]

Such a beautiful little girl; God bless you!

[nosh1j2j]

Good luck to you and your family. God bless!

[hellostonesfan]

Well, most people with Struge-Weber often have epilepsy caused by the brain slowly shutting down, so yeah, I'm pretty sure it is. Poor Alice, though, let's hope she has a full, happy life--she deserves it!!!!

[ChildOfTheSettingSun]

Is it fatal? :(

[aliedesuacido]

yea my friends younger brother was just born and he has this just want him to know my whole family is praying for him and we wsh him the best

[greensmile1]

i believe that alices problem is not sturge-weber but klippel tranauney syndrome.the widespread port wine stains,localised enlargement of various body parts,and glaucoma are classic klippel-tranuanay.the best guy in the world has the same,he's my husband,a real earth angel. hugs and smiles to alice prof.shoshanna fahima