in the dark

[Guest guest]

My daughter also has Mitochondrial Enzyme Disorders,Lactic

Acidosis,Biotin Deficiency known as Leighs Disease.

needs Thaimine 5.400 mg a day this is made up in powder form

just

for .she also needs Biotin three times a Day

..

has the mitochondrial clouding over her eyes which appeared at

only

six weeks of age when she started to deteriorate

is reg Blind totally helpless but fully understands & has just

reached

her 28th Birthday

Great Ormond Street London didn't think would make her second

Birthday Alder

Hey gave her 5 years at the most . 's immune system is poor so I

give

her Echinacea every day a very good multi vitamin to help her absorb

the

high concentration of Thiamine & biotin .

fits were horrendous especially as any light & everyday

noises (

Hypercucusis )

makes her fit so we had a room built off the dining room sound

proofed as

much as we could

light given by plug in the wall children's night light .we removed all

machines i.e washer etc

well away from 's room

the phone has the lowest ring we could get & no doorbell of course .

I found a good Homeopathic chap who also understands the allopathic

side of

her prescribed medicine & works with them 's fits have reduced

a lot

of course she still has major fits everyday then I play Mozart K448

piano

duet in D major that also helps I believe if you go to the Epilepsy

ass. web

site there is a link through to Amazon who will make a donation .

is an angel great sense of humour even though she is in a lot

of pain

with a dislocated hip due to no physiotherapy being available as

was

too ill to go to school ,

physio in the community only started at 16 yrs .

is unable to have any operations as she would not survive the

aesthetic let alone the trauma of the operation .

has two wonderful brothers who think the world of her they would

always fight who was going to push her in her wheelchair they both

wanted

too.

They live down south now with their families even now at their ages

of Neil

34 & Barry 30 They have to visit at different times so they can have

themselves they have always put first before themselves.It has

taught

them to be Kind & considerate to others .

's is angelkaren@... she loves her e-mails from her

friends

..

Kind regards .

Sue