Just4Children are raising funds to give Evie access to therapies and specialist equipment that will help her development and independence.
Evie is aged 5 from Warrington. She was born at 38 weeks during Covid in 2020 and spend the first 3 days of her life in the neonatal unit because of complications during pregnancy. On day 3 the hospital decided she could go home but due to an issue we had they took her back into the neonatal unit where she had a massive seizure and struggled to breathe.
This resulted in Evie staying in neonatal for further 3 weeks. At about 4 months old Evie start having random spasms. After 5 months of trying to convince doctors to listen they diagnosed infantile spasms, a rare form of epilepsy. Later, after numerous tests we learned that Evie had a rare gene called AARS and the mutation called AARS1. Thiscomes with many other issues like global developmental delay, dystonia, GORD, epilepsy, peripheral neuropathy and neuro developmental with movement disorder.
Evie has seizures daily and chokes regularly for reasons doctors can’t explain. The future is uncertain at the moment and there no cure or treatment.
When Evie was diagnosed we began to research therapies that would help make her life a little easier and help reach her full potential if Evie is to have the chance she deserves to be as independent as possible.
Unfortunately, the physiotherapy available through the NHS is not enough for her to be able to progress and build strength. We currently pay for private physiotherapy sessions and compassion focused psychotherapy. In addition we are looking at DMI Dynamic Movement Intervention. All of this along with Evie weekly private physiotherapy sessions comes at a cost which unfortunately we are not able to cover fully in the long term.
Evie loves the outdoors and loves going to granddad’s caravan. Evie has just been awarded a British Citizen Youth Award at the Palace of Westminster for fundraising in which she raised over £11,000 doing laps of the caravan park in her ride on remote control car.
Despite of all she has to deal with Evie is strong willed determined sassy happy little girl.
Thank you
