Dione Schick's blog

She made it to the top - Mt Kinabalu

Dione Schick — Fri, 20 Mar 2009 06:52:02 +0000

Further to my post a few days ago, Emma SMS me earlier today and said 'yes I made it'. So how's that to be standing at the top of Mt Kinabalu, age 13 with PFFD and a prosthetic leg with your school mates! Yes I do know that there are a number of disabled mountain climbers with prosthesis ... but when it is your own child born that very special day not so long ago, and you've really wondered (and worried) about their lives, and the opportunities they will get (or you think they will have to fore-go when they were born), it is still pretty darn neat to hear her say 'yes I made it'. Have a great weekend all...

Emma age 13 - off to climb Mt Kinabalu on Monday

Dione Schick — Fri, 13 Mar 2009 13:34:00 +0000

Mt Kinabalu is the highest mountain in South East Asia and is situated in beautiful Borneo a 2.5 hour flight from Singapore.

Emma, her twin brother Zach and a group of 20+ sports leaders from Tanjong Katong Primary School in Singapore are to set off on Monday to climb the mountain. Emma has one extra bag than the other kids - a spare prosthesis in case her main one breaks.

So fellow PFFD travellers, you can imagine the pride and wonder that we feel as her parents as she sets off to do what seems almost impossible to me even as an able bodied person. It is full credit to her school, her amazing teachers and their support and the belief that they, us and she has in herself to be not even flinching an eyelid at the prospect.

So to those parents who are just starting out on the PFFD journey, hold the faith. Emma continues to stike wonder and pride for us in each new thing that she does. She is determined, very 'normal', unstoppable and is unfazed by most everything.

I know that all parents want their kids to grow up happy and have a normal life. This is especially true for PFFD parents, and we wonder what we can do to assist with that normality and happiness. Emma has exceeded all our expectations of what she would be able to achieve even at age 13. When I read stories of adult PFFD'ers that normality often comes through as lifes milestones achieved; jobs, marriages, family, happiness, love. I know it is definately never plain sailing, and Emma's development has surprised us both in her 'normal-ness' and in her incredible uniqueness as well.

What an incredible journey is has been so far, let's see what the next stage brings us all.

Warmest regards
Dione

Emma age 12 - looking for penpal

Dione Schick — Sun, 30 Nov 2008 12:51:37 +0000

Emma was born in 1996 and is coming up13 years old. She has a twin brother Zac. Emma has PFFD in her left leg and we found out about her condition at the first scan at 15 weeks.

Emma has had no surgeries and wears an extension prosthesis. We met often with a number of specialists during the first 6 years of her life, including Ian Torrode in Melbourne (Van Ness Rotation), Dror Paley USA (lengthening) via letters/xrays from our orthopaedic surgeon in New Zealand who had worked with Dr Paley in the US.

We decided to do nothing, as lengthening was not an option for Emma due to the extent of her condition and the fact that we did not live in the US close to Dr Paley who did say that he would have taken her case on. We moved to Singapore over 4 years ago now, and when we went back to NZ last Xmas we met again with the orthopaedic surgeon who had consulted with (and had previously worked with) Dr Paley, and he said that what we had decided to do with Emma, was in his opinion the best thing, and what he would have done if he were her parent.

Emma is going to get her first high heel prosthesis in the new year and is looking forward to that.

She goes to a local Singapore primary school, rides horses, is a sailor and is climbing Mt Kinabalu (the highest mountain in South East Asia) next March with her fellow student leaders.

She has played netball, been a chair leader, done gymnastics, and she roller blades with her prosthesis. She is also a good swimmer.

Singapore is hosting the inaugural Youth Olympic Games in 2010 and she is hoping to compete. Her long term goal is to sail for Singapore in the Paralympics.

She is growing into an amazing young lady and our decision to get her a prosthesis that she can easily use, get on and off quickly and keep her body intact (i.e no amputation) was absolutely the right decision for us. It also has allowed her to live a 'normal' life even as we adjusted to life while moving countries.

With lengthening out of the question, then we reasoned that 'all' she needed was a prosthesis. Whether her foot was on or off (amputation) or backwards or forwards (van ness rotation) didn't make any difference to us ... bottom line was that she needed a prosthesis so we decided to leave her in one piece and just get her a prosthesis. It has worked very well.

She does have some leg pain (mostly behind the knee) and takes panadol about once a fortnight to help her. If anyone has any ideas about pain or pain control comments and suggestions would be great to hear how you have coped with leg pain.

If there is any other 12 year old girls out there with PFFD, I know that Emma would like to hear from you.

Dione Schick
Emma's mum.