Sarah Willow was born with a rare brain disorder. Just4Children raised funds to send her to a neuromotor research centre in the USA for therapy and are now helping her purchase specialist equipment and access further therapies.
Sarah Willow is aged 4 from Rowland’s Castle in Hants. She has a smile and laugh that is contagious. Everyone who meets her falls in love with her gentle nature. Unfortunately, the prognosis for her genetic condition (MICPCH caused by a mutation in the CASK gene) is generally poor. If there is a chance she will one day sit unaided or walk or talk then we want to give her every opportunity to reach those milestones.
The CASK gene is found in the whole body and is needed for efficient respiration and proper development of the brain. Without the gene the neurones in the brain do not fire properly and, as in Sarah’s case, often cause epilepsy. Sarah contracted epilepsy in October 2018 and it took nine months of emergency trips to hospital and physical and mental regression before we discovered she was being treated (accidently) with an unsafe dose of epilepsy medicine and, in fact, she had a rare form of epilepsy called epileptic spasms. This type of disorder needs to be treated immediately since every seizure causes brain damage which results in loss of skills.
We feel we owe it to our beautiful girl to make up to her those lost nine months of her life.
Since being properly diagnosed and being treated with the correct medicines (at the correct doses!) she has started to develop again. Whilst researching her condition we were advised to read a published scientific paper about some children with the same condition who had undergone intensive therapy in America and had learned lots of new skills. The children gained an average of two developmental years in just one month! The therapy costs $24,000. However, we believe this could be the difference between Sarah ever being able to pick up a toy or being able to communicate with us effectively.
Sarah Willow made it to America in May 2021, despite travel bans amidst the ongoing pandemic, and the results have been tremendous. Her communication has improved significantly and she appears so much more interested in her environment and happy to interact and play with her toys. Her sitting has also improved. She is now able to prop sit successfully and is able to use one hand to play with toys whilst siting.
Our aim going forwards is for Sarah to undergo a further intensive therapy (hopefully closer to home in Europe), since the results are so positive. She is also requiring more equipment to help her live life to the full, inside the house and out, and so we are using the fundraising to help us make these expensive purchases. We are so grateful to everyone who is involved in Sarah Willow’s Wish. Her wish to live a brighter life is certainly coming true!
If you would like to get to know Sarah Willow better then take a look at her Instagram page welliesandwillow