Ayannah is aged 8 from Sandwell. Just4Children are hoping to raise funds for SDR surgery at Alder Hey. This surgery will make Ayannah more comfortable and hopefully make transfers and sitting more comfortable for her. SDR requires a lot of physio therapy afterwards and there are some key items of equipment that she will need to facilitate her post surgery rehabilitation.
Ayannah and Khadijah were born 3 months premature. There were complications at birth, which resulted in Ayannah being born with Aysemtrical quadriparesis which falls under the umbrella of cerebral palsy.
In order for Ayannah to enjoy basic physical independence, she undergoes a rigorous regime of physiotherapies; from daily stretches in standing frames, to keep her skeleton and muscles aligned’ FES or Functional Electronic Stimulation, hydrotherapy, physiotherapy to a night time sleep system to help her maintain a correct sleeping position.
Despite all these daily interventions and therapies, Ayannah is still unable to complete a basic independent physical tasks, that we all take for granted, such as getting out of bed, standing up, getting dressed and even going to the toilet. Ayannah’s altered muscle tone (tightness in the muscle that occurs whenever she moves) means that these tasks will always be out of her reach.
However, there is a procedure that can help – SDR.
SDR is a surgical procedure aimed at reducing spasticity (tight and stiff muscle tone) in the lower limbs by dividing some of the lumbar sensory nerve roots, thus interfering with the reflex arcs that cause increased muscle tone. It’s mostly used for children with spastic diplegia (2 limbs affected). Spastic diplegia accounts for 25 to 30% of children born with CP.
The surgery will achieve a long-term reduction in spasticity, improve Ayannah’s function and mobility, increase her independence and increase her range of motion and positioning.
In order for this procedure to be successful, Ayannah must undergo intense physiotherapy lasting at least 5 years and this must be privately funded. It has been made clear to us, that the procedure won’t be of use if there are no funds to assist with payment for all therapies and aftercare.
We are on the waiting list and the procedure could happen as soon as June 2020. Ayannah has undergone the assessments.
Being a twin, it is hard for both the girls to realise they cannot play together how they want to. Khadijah will try and include her sister with all games but this cannot always be the case.Ayannah can only view from the sidelines as her peers and sister play team games, run races, climb trees and play tag! This can lead to frustration and the questions, “Why can’t I Walk?”, “What’s wrong with my brain?”, ” Will I ever walk?”
Once Ayannah has the procedure, all the spasticity in her muscles will be removed. This will mean that Ayannah’s gross motor functions will have to be rebuilt and reprogrammed. This is intensive akin to asking an adult to go to the gym 7 times a week while studying and working full time. This is going to be hard for her 8-year-old self to cope with. Ayannah already has learned to write with her left hand although being naturally right-handed.
She is such a witty fun bright girl that lights up a room and will be sure to make you laugh.
The funds will allow us to provide her with targeted physiotherapy, private hydrotherapy sessions, and specialist equipment, for home therapy use.
Thank you for taking the time out to read this. Anything you can donate will be more than appreciated.