Leo’s amputation and prosthetic cover story

Blog » Fibular Hemimelia » Limb loss » Personal Stories » PFFD (Proximal Femoral Focal Deficiency)

Five-year-old Leo White from Greater Manchester is the first child in the world to receive a Limb-art prosthetic leg cover after leg amputation due to PFFD and fibular hemimelia.

He was presented with his own Pokémon leg cover at Christmas by Mark Williams, founder of Limb-art.

Read about the launch of new paediatric prosthetic covers by Limb-art in conjunction with Steps here.

Leo was born with a left leg 50 per cent shorter than his right leg due to a congenital condition called Proximal Femoral Focal Deficiency (PFFD) and Fibular Hemimelia which were picked up at his mum’s 20-week antenatal scan.

The family were put in touch with the Ability Centre in South Manchester, where they met the team who would be working with Leo right through to his adult life. Various options and processes were discussed with his rehabilitation consultant, surgeon, physiotherapist, occupational therapist and prosthetist. These included leg lengthening, a prosthetic with no surgery, rotationplasty surgery and amputation.

His mum Claire, 33, and dad Jamie, 36, an interactive developer, decided it would be best for Leo to undergo amputation.

Claire said: “There was a lot to take in and we took the time to do our own research on the development of prosthetics, reading information on PFFD and amputations on the Steps website and joining groups for PFFD on Facebook to get an understanding of what it was like living with the condition and feelings about surgical and non-surgical approaches.

“Leg lengthening was quickly ruled out due to the multiple surgeries and the amount of time that Leo would have to spend in hospital throughout his childhood because of the extreme difference in leg length.

“It mostly came down to our own feelings on the matter. We both felt strongly that Symes amputation would lead to a better-fitting prosthetic and would be more aesthetically pleasing to Leo as he grew and became more self-aware of his appearance.

“The idea of your child having an optional amputation does feel very scary at first, however we have never regretted the decision we made and we are very open with Leo as to why we took that route.

“We had a cast taken of Leo’s little foot when he was six months old as a little keepsake for us and him as obviously he doesn’t remember the surgery which happened when he was 20 months old.

“Looking at him now, we couldn’t be prouder of how he has dealt with his difference, so confident and happy, he is very proud of his ‘robot leg’.

“I looked at limb covers by Limb-Art a year or two ago on Instagram, and I remember thinking back then Leo will definitely need one of these as he gets older!

“When Steps mentioned the possibility of a paediatric cover for Leo, I showed him some and we both thought they looked great, and it got us excited about how Leo could ‘dress up’ his prosthetic to make it stand out.

“I was already altering his trousers so that his prosthetic would be exposed, this was so that the trouser leg wouldn’t get caught on the metal bar but also because Leo liked having the colour or pattern that was on his prosthetic socket on show.

“The leg cover means that now Leo’s whole prosthetic limb looks incredible. It is a great way to express himself, his individuality, and a big confidence booster as he grows up. As soon as he was fitted with it, he started dancing in it with his three-year-old brother Ashley.

“Leo enjoyed the process of being measured and he especially liked the choice in images that he could have. Pokémon was the clear favourite and he loved showing it off to his friends at school.

“We feel very honoured as a family that Leo is the first to receive a paediatric limb cover – Steps and Limb-Art have done an amazing job.”

Apply for a children's prosthetic cover

Steps has funding for a number of prosthetic covers from Limb-art for children aged between 2 and 17. To apply for a paediatric cover

Launch of prosthetic limb covers for children

Donate to help other children

Steps are fundraising to provide limb covers for children around the world, boosting their confidence and self-esteem. Please help today.