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Re: Inga Huges

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Dear Inga

is a special child indeed. And with all the

challenges I onley got rich in myself. There is not

enough words to thank my Mom for all the help she gave

over the years. We are sometimes guilty in not

telling them how much they mean to us, and must get

into the habbit of doing so! Thanks for your note!

Elize South Africa

> >Hi! It is nice to eventialy be able to communicate

> about my child's

> >condition. was born on 10 October 1992 at

> a birth weight of

> >900 grams and 52cm long. She was born

> dismenture(small for date

> >baby), and looked horible I was disapointed,

> because here I had this

> >pink, pealing very skinney little baby.(In all I

> was acused of being a

> >alcoholic and or a chain-smoker to give reason for

> my childs birth

> >condition.)

> >

> > was hospitalised for 2 and 1/2 months in

> an icubator in a

> >general hospital facility. She was tube fed and

> did not move at all

> >by herself. Luckely I am a registred nurse and

> could at least give

> >her the tube feeds. Althoug I was not allowed to

> cuddle her or pick

> >her up at all.

> >

> >At her first week she had a elevated temparature of

> 40degrees, and I

> >was shocked to see the big infusion in my childs

> head. It was said

> >that she got sick because she was handled too

> mutch. She was put on

> >IV antibiotic treatment. She got better. After

> discharge at the

> >wieght of 2kg she was only at home for 5days and

> needed to be admitted

> >again. By then her peadiatrition had a Heart

> attack and was not

> >available. It was very difficult to explain to the

> medical personnel

> >that took 1 hour to drink her 20ml feed (a

> 3 hour routine)

> >They thought that my child was underfed and that I

> could not handle

> >her well. Nobody took the time to listen to her

> history.

> >

> >So things wnet on for about 2 years, continously

> contracting

> >pneumonia, admitted and treated with Iv

> antibiotics. Then my general

> >practitioner refered her to an Endocrine Specialist

> in Pretoria South

> >Africa, who just said " This child has just got a

> over Pigmentation

> >(coulouring of her skin)and there is nothing wrong

> with her " althoug

> >I had to give her medication for a Fever that day.

> >

> >So anoter 2 years went by till a wonderfull person

> came into my life A

> >peadiatrition Dr Elna Gibson she understood me, she

> evaluated my child

> >and her condition, we tried various treatments to

> build 's

> >Immune system and to prevent the chronic pneumonia.

> We were refered

> >to HF Verwoerd Hospital, where under the care of

> Prof Witteberg and Dr

> >Andre van Niekerk, 's diagnoses were made

> at the age of 5

> >years. She has a highly IGg2 difficiency,

> developed bronchiectasis

> >from the chronic pneumonia and of course Russal

> Silver syndrome.

> >

> >They started her on monthley Polygam infusions

> (Human Imunoglobolin)

> >which helped not to get sick so often. We

> treated her wirh

> >the Polygam till she was 8 years old, where she had

> a

> >lobectomy(partial removal of her one lung)to remove

> the affected part.

> > Since then she never had Pneumonia again.

> is now 13 years

> >old and weigs 15kg, and stil wears 6 to 8 years

> clothes. She is a

> >sweet little one and always have a smile to give.

> If it was not for

> >that smile I would have not made it throug this

> years. In all this

> >time I maintained a steady job, never took of work.

> Thanks to my

> >dearest Mom, I even tought her to administer

> 's Iv medication.

> > Otherwise I went and give her treatment at lunch

> breaks, after work

> >and in the middle of the night.

> >

> > had to undergo bilateral Osteotomies to

> straighten her legs,

> >and since 1 Jan 2004 her left leg did not heal, the

> internal

> >ficksation had to be replaced twice, and she was in

> a spica splint for

> >8 months. Now the only thing we can do is to hold

> thumbs for her leg

> >to heal.

> >

> >We made it, and are trying to get permision form

> our Medical Aid to

> >start growth hormone treatment. has got

> all the clinical

> >signs of the Syndrome and is actually a

> beatifull child, and I

> >love her to death. It was hard to have depression

> and handling it

> >myself. Sometimes dificult to handle people's rude

> comments, just

> >bacause they did not ask qeustions and did not

> listen. If anyone has

> >qeustions where I can assist you, feel free to do

> so. My child is

> >over the worst and now we can breathe I needed help

> a long time ago,

> >and the support groups and various countries should

> be more reachable.

> >

> >I only got all the information of the Syndrome in

> 2003. That is a

> >shame I could have done a lot more!

> >

> >

> >

> >

> >

> >

> >

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