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My Son Luke © 1997-98 all rights reserved
When I woke up this morning, I noticed that my big toe was missing.... in it's place was a note . It said "gone to market." I thought this joke was really funny, told all my friends & had a laugh. When I asked Luke's father, on the way back from the delivery room, if all his "bits" were there, he replied "no, his big toe is missing"..... I laughed....... "No really" I said, "is he OK?" His big toe WAS missing. A small sign of something greater. His left Tibia was also missing. "Will he be able to run & play football?" I was talking to Luke's consultant, Luke was 4 days old. " Yes of course he will". Fine, then there was no problem. Then I got to think. The next day I called the consultant back, "how exactly will he do this?" "With an artificial leg", was his curt reply. This was a bombshell for me. My child was going to be handicapped, would he be better off dead? It's not fair, he's done nothing wrong! If I shut my eyes and open them he'll be normal. God... I can't cope. STOP.. stop. He's beautiful, he's my son, he's just going to have more to contend with. I CAN do it. "Will his artificial leg be fully functional? Will it work with his own nerves & muscles?" I was talking to my GP. "Oh yes, yes.. it's amazing what they can do now a days". He knew nothing about prosthetics. Nor did I. When Luke was nine months old, we went to visit another family who's son had the same condition as Luke. He was a year older and more severely affected. ( Tibial hemimelia syndrome can effect both the legs & the arms, Luke is lucky, it's just one leg, the rest is fine.) This was the first time that I saw the prosthetic leg which Luke would get. It was straight, hollow & plastic - like a dolls leg. "There must be some mistake I thought, "what of the technology - the bionic leg...." I had made no mistake, no one manufactures functional parts for one so small. I was devastated. Luke had his leg disarticulated through the knee at GOS, he was a year
old. (Disarticulation is amputation through a joint). His femur is short,
leaving ample room for a false knee. He recovered well and was soon ready to try
his prosthetic leg. "I really Since then we haven't looked back. Luke is 4 now and goes from strength to strength, jumping hopping, running - he climbs the steps for slides, jumps off the stage at play school, runs up & down slopes and does everything which a child with two biological legs would do. He has a new Knee from Century XX11 - The little wonder children's Total Knee which is a modular system with seven bar linkage (sounds impressive doesn't it!) - and he's just about to receive a Flex Walk foot - thanks again Chris. He controls the bend of his knee at will & he's a joy to watch. When I was first introduced to STEPS, Luke and I had just come home from hospital after his birth. A friend of mine had had a son with Talipes, she gave me a STEPS news letter. I read an article about a boy who's fibula was missing. I found it very distressing and read no further. I didn't join STEPS. Instead I set about finding out as much as I could about children's prosthetics & Luke's condition. An absolute dream has been the internet. There is a web site for parents of children with amputations (http://www.child-amputee.net) and from here you can join a list server - called I-CAN. This is world wide e-mail list for parents of children with amputations and when a letter is sent it goes to every member on the list. Should you want to send a reply, this also goes to every member. I read the mail every day and chat a fair bit too. I feel that I know the others on the list & love to hear about their children & what they've been up to. Swapping information & experiences on a day to day basis is a joy. I wish that everyone could have access to this facility. Now I want to get more involved with STEPS , meet other parents & give Luke the opportunity to meet others like him, I should hate for him to think that he is the only one. I still wonder at the lack of functionality in small children's prosthetic legs, and I shall still bug who ever I can about it, but Luke is the apple of my eye & his achievements so far make me swell with pride.
Lorraine & Luke's Home Page Williams & Saenz meet in England Williams & Saenz meet in Spain
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A very special
THANK YOU to Wyatt and Michelle who are the proud parents of Joe
(RBE) for donating the www.child-amputee.net domain and web space.
Copyright © 2004
International Child Amputee Network
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think
he could do with a knee joint " - now I was talking to his prosthetist,
Chris , at Norwich. "no one makes them, he's too small, it would be too
heavy ....." Poor Chris, I won't be told . "But why, but what if, has
any one tried...." Having no other option, Chris MADE a leg with two hinges
either side of the knee area , pulled straight with elastic on the front, over a
piece of wood. It was brilliant. (thanks so much Chris)
