Just4Children are raising money to get Alexia much needed private physio and a trip back to St Louis Hospital in America to have her post SDR operation check.
Alexia-Rose from Weeley near Clacton on Sea in Essex was born at 28 weeks and 2 days weighing just 2lb 15oz. We spent 2 months in a special care baby unit and at under 5lb Alexia came home.
That’s when the problems started and Alexia kept stopping breathing. We ended up having to resuscitate her and we went back to hospital via ambulance many times.
After lots of problems and Alexia not hitting any milestones at 8 months old we received the devastating news that Alexia had quadriplegic spastic cerebral palsy, global developmental delay. And, at 2 her epilspsy started. We were told she would never walk or talk and we knew then we had to do all we could to help improve her life.
That’s when we found out about the SDR operation and that it could improve Alexia’s life in many ways, mainly to live pain free. She is unable to sit unaided, stand or walk. We were hoping with the SDR and intense rehabilitation we could improve Alexia’s life no end.
We were lucky enough for Alexia to go to America and have the SDR at the age of 5 on 20th September 2018. She is doing really well but needs ongoing input by her private physios to help her learn to do things such as feeding herself and walking in her frame.
Whilst in America we saw a specialist regarding her stiff arms and they have made her the most amazing night splints. They have warned us a year or two down the line she will need her arm muscles lengthened which is obviously going to be quite a cost. She is also autistic and so really struggles with communication and new people.
Although Alexia faces many challenges and hard times in life, she is the most happy child and lives life to the full. She loves theme park rides, trains, car journeys and days out.
Thank you for taking the time to read Alexia’s story.