Laila practising walking with her new prosthetic leg
Laila’ Steps Fund
Steps is extremely pleased to announce the launch of the Laila’s Steps Fund.
Laila is an extraordinary little girl who was born with Fibular Hemimelia. Fibular Hemimelia is a partial or total absence of the fibula and is the most common form of lower limb deficiency present at birth. There are two long bones in lower leg, the thicker one is called the tibia and the thinner one is the fibula. With Fibular Hemimelia the tibia is shorter than normal and the fibula is missing or underdeveloped. Treatment will depend on the severity of the condition and how normal the foot is. If the foot is twisted outwards to the side it may be possible to correct it sufficiently using surgery
If the foot is not sufficiently normally formed and the tibia is too short it may be best to amputate it through the ankle using procedures such as the Syme’s or Boyd amputation and fit an artificial limb (prosthesis).
Laila’s parents, Jenna and Shaun, after many appointments with doctors, decided to opt for a planned amputation. Laila’s operation was on the 16th of January 2019. On the 9th of April, she received her first prosthetic leg and within days she was walking all by herself.
What will the fund be used for?
Emotional Support (through videos, publications and guides)
Based on the feedback received from parents of amputee children as well as health professionals, we believe there is currently a lack of emotional and practical support for families that decide to have an elective amputation irrespective of whether this is caused by a congenital condition, trauma or illness. This is perceived to be the case particularly for families that come from a disadvantaged background or from ethnic minorities.
Steps aim to produce a series of parents guides, videos and factsheets which will help families through the difficult decision of opting for an amputation.
The information will provide practical solutions to everyday challenges as well as supporting parents and children attending nurseries or school.
Prosthesis – a basic right
Laila was born in England and can access the excellent services of the NHS. Laila is also able to receive activity prothesis such as running blades, water activity legs as part of the Department of Health fund.
Unfortunately, this is not the case for children living outside of Great Britain. Furthermore, once Laila will become an adult, the fund will no longer support her and she will be forced to purchase her own activity prothesis.
With the money raised we aim to support families and individuals accessing activity prothesis as well as equipment in those countries where there is no available fund. We also aim to provide children in developing countries access to every-day prothesis which will enable them to walk again.
Stepin Camps
For many people with a lower limb difference or loss, life is about everyday challenges that require inner strength, a loving and supportive family and friends, and the availability of good equipment and care to unlock their true potential.
The Stepin camps are designed to offer activities and workshops where the entire family can “step-in” and share medical, social and emotional experiences that will be of use and some comfort to the families involved.
Find out more about Stepin Camps here.
