In celebration of World Cerebral Palsy Day on 5 October 2016, we invited a family receiving services to share their story.
Cerebral palsy is the most common physical disability in childhood. It is an ‘umbrella’ term used for a group of movement and posture disorders caused by damage to the developing brain.
Most people with cerebral palsy are healthy and can expect a normal life span, participating in meaningful studies, hobbies and employment. However, children with cerebral palsy may require extra support and encouragement, and this takes a lot of dedication from their family and others around them.
The following is written by Jessie-Lee, who is Mum to six year-old Shakira.
Shakira was diagnosed with cerebral palsy when she was 2. She has since received physiotherapy from the wonderful team at Therapy Focus. They have been able to help Shakira reach goals that I never thought imaginable.
With her calf being constantly tight she couldn’t ride a normal bike but with support from Therapy Focus, we were able to work with Dream Fit to modify a bike for her. Shakira can now the ride the bike without the heel cups that used to hold her feet in place! She wears an Ankle Foot Orthosis (splint) daily to help stretch the calf. This can be challenging some days as she sometimes just wants to wear her special ballerina shoes, but with a lot of encouragement she agrees to wear it daily. Some of the things Shakira has used to manage her CP include daily stretches, splint, Botox, tilted foot step, hop scotch, trampoline, Dream Fit bike, squats, and swimming.
Shakira started Botox injections at the start of the year and I have seen a fantastic difference in her range of movement. Daily stretches take place at home and school and with the help of the injections Shakira has come so far in her physical activities. At last year’s sports carnival she had to stop and jump side legged over the hurdles; this year she is jumping with both legs together in a forward motion. The school captured a fantastic shot of her leaping over them with all the joy in the world.
She is a beautiful spirited little girl and will give anything a go. As a mother with a daughter with special needs you have to stay focused, happy and encouraging as I believe they feed off you a lot and if you show a slight sign of “they can’t do it” or “that might be a bit hard” then you’re instantly setting them up to fail. Stay positive and if they give it a go and it doesn’t work that’s ok, they gave it their best shot.
Shakira’s school has been an amazing support to her. In addition to assisting with her stretches, the school recently participated in ‘Steptember’, a fundraising event for the Cerebral Palsy Alliance. Calling themselves ‘Shakira’s Stepparoos’, four of her teachers took on the challenge of completing 10,000 steps a day for the entire month in order to raise vital funds. It was a big challenge but it was for a very worthy cause.
One in two people with cerebral palsy are in chronic pain due to the tightening of their muscles. Many will never be able to take a single step without assistance. If you would like to support the Wanneroo Primary School Team “Shakira’s Stepparoos” visit their fundraising page. Any amount you contribute will make a huge difference to children and adults living with cerebral palsy.
For more information about World Cerebral Palsy Day visit the website.
Pictured: Shakira with ‘Shakira’s Stepparoos’.