Juanita Phiri just turned 10 and her family and community are working to get her a new wheelchair to make the next phase of her life more comfortable.
South Africa (23 May 2023) – Juanita Phiri just turned 10-year-old and her wish is to move into this next phase of her life, in comfort. To do this, her family will need to buy her a new wheelchair as she has outgrown her old one. They set up a crowdfund for her and already, people are helping make her birthday wish a reality.
When she was born, which was a very difficult birth, Juanita lost access to oxygen which resulted in her being diagnosed with Cerebral Palsy. The congenital disorder affects her entire body, so she needs support to hold her whole body correctly.
As she is getting older, Juanita has naturally outgrown her current wheelchair which would normally offer great support but she now needs a new one to adjust to her growing body. While Juanita isn’t able to use her own words, her mom shared what she would say, if she could speak for herself.
“Because I can’t hold my own head and body upright, I have a severe curvature of my spine and my right hip is dislocated. I am not able to stand or walk so I rely on my parents to carry me and bath and feed me and I am often in a lot of pain.
I cannot speak but my mom understands what I need really well, and my speech therapist is helping me to find other ways to communicate with everyone around me.
Unfortunately, my medical aid does not cover many things. I have regular therapies to help make me as functional as possible and to maintain my body and every 4-5 months I need Botox injections to help relax my muscles and to manage my pain.
I have gotten really tall and no longer fit in my wheelchair properly. Because my spine has gotten so bad, I need a very specialised backrest so that it does not get worse. This could affect how I swallow and my ability to breathe.”
Mom shared that Juanita loves music, her favourite songs include Thunder by Imagine Dragons and Happy by Pharrell Williams. She loves her Mac n Cheese for dinner and would never turn down a sweet dessert! Juanita’s best friend is her 5-year-old brother, who has a hearing impairment.
The family have been working with therapists to help Juanita be as comfortable as possible and their medical aid does help but not nearly enough. The crowdfund will help the family access the funds needed to get the specialised wheelchair and care Juanita needs to keep comfortable as she grows.
Her therapists even sent in a few encouraging words to help with the fundraiser. Her speech therapist Leanne Hyams shared that Juanita beams when she is able to communicate and be understood. They started working together in 2021 and are seeing great improvement.
“Juanita is an absolute gem and enjoys being in the company of others. Her entire face lights up when she realises that someone has understood her communication attempts and responds appropriately.
Due to her cerebral palsy, communicating by means of verbal speech production is tricky for Juanita in terms of achieving adequate breath support, voicing and the controlled and coordinated motor movements of the oral structures that speech requires. She also presents with challenges related to the eating, drinking and swallowing of food and liquids; as well as positioning her body to allow for her to be able to eat and drink safely.
Luckily her mom is so patient and ensures that she is able to take certain food consistencies safely to gain weight, grow and enjoy. She desperately needs a new chair to provide her with the postural support and comfort that will make these daily tasks like eating and communicating a little bit easier and more enjoyable for her and her family. She would also benefit massively from a high-tech eye gaze AAC (augmentative and alternative communication) device to help her express her thoughts, her wants and needs, her opinions and her humour.” – Leanne Hyams
Her physiotherapist Jessica Joffe started working with her in 2018 and says that Juanita has a resilience stronger than she has seen before.
“She is an absolute pleasure to work with and there are few children as resilient, truly happy and engaging as she is.
Juanita has spastic quadriplegic CP with dystonia and epilepsy. This means her whole body is affected and she struggles with spasticity and involuntary movements making sitting independently or controlling her limbs for functional activities very difficult. Despite our greatest efforts (coupled with mum’s astounding dedication to her home programme), due to the severity of her disorder, a severe scoliosis and hip dislocation have sadly been unavoidable.
While therapies are assisting with slowing the progression, to avoid extreme and painful surgery, Juanita needs very specialised equipment. Should her scoliosis progress further she will no longer be able to breathe and swallow effectively or sleep comfortably. A specialised moulded backrest is now necessary on a larger wheelchair than she has, which the family are unfortunately unable to afford. Any assistance would go an extremely long way to keep this wonderful young lady happy and comfortable.”
The hope is to raise the funds needed for the back support and a bigger wheelchair, should anything else come in, they can work towards the eye gaze AAC too. You can contribute towards Juanita’s fund here if you are able.
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