On Saturday 17th July 2021 we will “Ride for Ayannah”

We are calling all cycling enthusiast to get involved and help raise awareness and raise the much needed funds to improve Ayannah’s quality of life.

We will complete a 100 mile bike ride between Liverpool’s Alder Hey Hospital and Birmingham Children’s Hospital in an effort to raise awareness and as much money as possible towards the treatment Ayannah requires.

Ayannah is a wonderful 8 year old who is 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

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 that the procedure won’t be of use if there are no funds to assist with payment for all therapies and aftercare.

Ayannah is 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?”

The funds will provide Ayannah targeted physiotherapy, private hydrotherapy sessions, and specialist equipment, for home therapy use.