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Thank-you for the gifts you have given me

Megalencephaly-Capillary Malformation Syndrome is a rare disease. About 150 cases have been reported in the medical literature and very little is known about the disease.

So what is the pedorthic response when a little one – at 18 months comes to our pedorthic facility with the syndrome – and she is on the move! Her Mum has been told that perhaps Piedro footwear would do the trick!

The 18 month year old was born 10 weeks premature and is well and truly on the go for her corrected age. Let’s call her Annabella. The effect of the syndrome when it comes to her legs and feet are:

  • one leg is bigger that the other,
  • one leg is shorter than the other,
  • both feet are oedematous – one more than the other – maybe it is lymphoedema,
  • and one foot is bigger and longer that the other
  • and Annabella is walking on her toes

When Annabella comes to our pedorthic facility she loves the toy puppies and is in for a game – walking and climbing!

So what matters to me as a pedorthist?

  • The shoe story will sort itself out easily – split fit, extend the straps, and the LLD to one sandal

    • easy to manage re foot entry,
    • easily modifiable
    • and we are heading to the warmer months.

The matter of split fit for the first supply is being managed by the purchase of 2 pair. With forward planning a split fit can be ordered. The priority is Annabellawho is on the move and needs appropriate footwear

  • The ongoing shoe story requires some thought and some planning with the where to for the winter season – for a closed in shoe or boot being the most immediate. The questions are:

    • What styles?
    • What colours?
    • Will she get her feet in?
    • What about her toes?
    • Can we get split fit?
    • Will Annabella always have to wear the same shoes? And the same colour?
    • We want her to be like all the other kids!
  • Matters of funding need to be given thought – private dollars, health insurance cover for Annabella, and the SWEP program which is funding support from the government purse. Education and teamwork – this is what we do as pedorthists at Happy Feet Pedorthics – this is the norm, what we expect to do.
  • My mind is also travelling to when Annabella is deciding what she will wear today – starting at 3 going on 13!? What footwear will work for her? What will she wear
  • I am in the moment with Annabella’s Mum and her Grandmother. Two women who exude unconditional love for their little one. Two women who are on to it with their next generation – Annabella. Fun loving, guidance, accolade, respect for choice, allowing for risk, ready to console and such joy. Annabella, like all the other kids will play, maybe also at child care, kinder and then school. She is on the move – things to do, places to go!
  • I take my hat off to Annabella, to her Mum and to her Grandmother. Thank-you for the gifts you have given me.

    Clare Nelson C Ped CM AU

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