A contact page for the younger ones amongst us (and their families)


I recently (June 2000) received an e-mail from Bill and Chris Thorne from New Zealand concerning their Granddaughter Becky. It went as follows.

Dear Slim

What a great site! My 3 year old granddaughter is due to go in for surgery next week to correct a tibial fracture caused by congenital pseudarthrosis.
Very few cases of this happen "down under" (Christchurch, New Zealand) and there are not many resources. So I took to the net and found your site (after a few days searching).
I am really impressed with the information and experiences recorded there. Some great hints for clothing and site cleansing. I have yet to explore it fully but thought I would drop an email to say thanks.
How can I contact parents of other toddlers who have to have a fixator?

Regards
Chris Thorne

I thought that the last line was probably of great importance. And so this page is now being set up specifically to hold e-mail addresses, web sites and the like which relate primarily to fixation as applied to the younger people out there.
Some of it will also exist elsewhere on the site so don't be surprised if you bump into it on other pages. However I thought that I'd try to collate such info as I have for this specific group, in one place - here!.
It is also worth looking though the achived noticeboard pages as some of the queries there relate particularly to children and younger people. [Noticeboard] Chris and Bill Thorne are the first to have their names on the new list below.
You can now read their Grand daughter Becky's story by going to the TALES page

If you wish to have your e-mail address added then drop it to me at the usual place Submissions and I'll add it a.s.a.p.

I have also decided to add any short tales of encouragement specifically aimed at younger people to this page after the list of contact points. If you'd like to contribute, don't be shy, write today!


Hot Off the Presses

(Oct 2000) I have discovered that there is an e-mail group specifically aimed at the parents of children who are undergoing orthopaedic fixation treatment. At present it is new with few members. I hope that this site can help direct a few people to it and that it may be of benefit to all concerned. I have no involvement with this site and am unable to vouch for it's long term esisitence potential but I hope that it will be great.

The site address is www.groups.yahoo.com/group/parentsoffixatorkids


Contact's name

Frame wearer's name

Medical problem

E-mail address

Bill and Chris Thorne

Becky (Grand daughter)

congenital pseudarthrosis

Bill & Chris Thorne

Bonnie

PJ (Son)

Olliers

Bonnie (AAMED)

Charlie Ambrose

Himself

Help & advice for teens wearing Ilizarovs

Charlie Ambrose


Contact's name

Frame wearer's name

Medical problem

Web page

Anne Dean

Oscar (Son)

Larsen's syndrome

Oscar's Page


Resource name

Medical specialty

Web page

Texas Scottish Rite Hospital for Children [US]

Ilizarov planning

Texas Scottish Rite Hosp.

STEPS charity [UK]

Lower limb abnormalities

STEPS

Birmingham Childrens Hospital [UK]

Cranio Facial Unit

University Hospital

Children's Hospital, BC, CA.

Ilizarov info

Children's Hospital

Genetic and rare conditions. National and International groups

General information datatbase

Conditions help database

The American Association of Multiple Enchondroma Diseases .

Olliers, Maffucci, MHE

AAMED.net


Shorts!

From RANDY DOBSON.
I would like to drop you a line...and let you know of my sons experience with the ILZAROV frame, for any parent that might have doubts about it.
The story starts many years ago when we adopted our son at 18months, he had a leg injury as an infant which damaged the growth plate in his left leg...thus stopping or slowing down growth of that leg.
At 7yrs old he had an ILZAROV put on to straighten and lengthen his leg. It was on for about 13months. After getting the frame off and going thru therapy...he wanted to join taekwondo, which we allowed with much reservation (wasnt sure if he could perform all the moves) at the age of 9yrs old.
He went to taekwondo...climbing that ladder to the infamous black belt that he wanted. Well at 12yrs old..he had frame put on again for lengthing so he had to stop taekwondo during that time. After getting frame off 8 months later he started therapy, but it didnt seem to work..so we decided to put him back in taekwondo earlier then we had scheduled to.
Well..not only did the taekwondo complete his leg therapy to 100%..9months later..at the age of 13yrs old, he went thru a grullying 4hour test and got his black belt..not to shabby for a two time ILZAROV patient.
Now at 14yrs old he is an assistant instructor at his taekwondo school...and has the highest and most powerful kicks of anyone there..and yes..the one he kicks highest with is the one that had the frame on his leg.
I tell this story not to brag..but to show other parents that the procedure doesnt mean the child will remain handicapped or be limited in activities...because..unfortunately ...we intially thought that.
thanks
Randy


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