Just Luke

My Boy

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 dissarticulated through the knee at GOS, he was a year old. (Dissarticulation 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 reallythink 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)

Since then we haven't looked back.Luke is 6 1/2 now and goes from strength to strength, jumping hopping, running - he rides his bike without stabelizers, runs up & down slopes and does everything which a child with two biological legs would do. He has a Knee from Century XX11 - The little wonder childrens Total Knee which is a modular system with seven bar linkage (sounds impressive doesn't it!) - and he's just got a Flex Foot Vari Flex ! 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 whos 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 childrens prosthetics & Lukes condition. An absolute dream has been the internet. There is a web site for parents of children with amputations (http://www.amp-info.net/childamp.htm) 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.

Luke & I go to the States every year now, to meet up with the I-CAN folk & to 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 childrens 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.

Now I want to talk in a more serious nature about Luke's condition.
This is intended for anyone in a similar situation to me, who needs information or just wants to know more.
I will be scanning some photos of Luke's leg before his amputation, showing his foot, typically with an absent tibia, pointing upwards. He had only four toes (the biggest was missing), but, you know, he could wiggle them all!

Luke also has PFFD - shortening of the femur, which affects the hip too. In Luke's case the short femur works well as his prosthetic knee has the room to be in the correct possition ! For those of you intersted in prosthetics, I will talk a bit about how I went about getting what I thought Luke deserved, and how Luke has addapted to every change in his leg's configuration. For those interested in the kit, Luke now has a Total Knee (small wonder) from Century XXII with a Flex Foot, Vari Flex. His gait is very good though as he gets older & is now at school full time, it is apparent that he does get tired if the class go for a long walk, for instance. Recently we have visited a physiotheripist who has given us some excercises for Luke to do to improve his aductor muscles (in the hip). Because the socket provides an extoskelital structure, he has not been using his muscles properly. This may, in the long term lead to scoliosis or foot problems in his right foot. It took some doing to eventually get to see a physio (why ???) but I'm really glad we got there at last.

Ok,now I'm including some photo's of Luke's socket as it is with the pelvic strap & then another socket with an Alpha liner. These both work really well for Luke. He has more control with the liner socket, but unfortunatly he is allergic to the liner itself .... we are still trying:

This is Luke's pelvic strap socket. (You can also see the "trouser guard" I've develpoed in the hope of saving the knees on his trousers getting torn by the metal Total Knee)

This is Luke's Alpha liner & socket.

If anyone reading this knows of any up & comming children's kit, do write & tell me, I'd love to investigate.

You can reach me by e-mail at: lol@lorrainewilliams.com

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