Violet. Our CP Warrior Princess
Violet, our beautiful 4 year old Grandaughter, has Complex Medical Needs and needs 24 hour care.
Violet has been diagnosed with ‘Spastic Cerebral Palsy’ (affecting all four of her limbs), Dystonia (chronic involuntary muscle contractions) ‘ESES’ Epilepsy and a rare chromosome disorder.
Her day usually starts at around 5am where she is given a multitude of medications through her stomach tube.
Violet’s health is a constant worry to her parents and she spends a lot of time in hospital. Even the common cold virus can be devastating for Violet’s little body, resulting into a period of time in hospital and her little body pumped full of steroids and antibiotics. .
Violet has recently been diagnosed with ‘ESES’ Epilepsy. This is rare, and it is evil. She is suffering from lots of side-effects while the hospital tried to get the treatment and dosage right. It stresses and strains her little body and it affects her cognitive learning… but still she continues to smile… .
Violet, and her Twin Brother Henry, have the most amazing parents who are not only kind & loving but hardworking, inspirational and very determined.Her Mummy, Becky, is Violet’s primary carer, but she still finds the time to write letters raise funds, fight policy, dispute decisions. Almost everything is a constant battle, from the equipment and help that Violet desperately needs, Disabled badges, disabled access, schools, help and respite care, diagnosis, specialist appointments, hospital treatment the list goes on and on!
Violet’s Daddy is their ‘rock’, their strength and their hero… But even he has reached that point where your legs buckle and your heart breaks for the little girl who just wants to smile….
Unfairly, everything is a hard, each day brings new challenges, some successes, many failures and stresses, but Violets’ Parents continue their fight for Violet… Our CP Warrior Princess.
Their biggest stress is financial. Raising a child with Complex Medical Needs is incredibly expensive. Becky gave up her career to be Violet’s full time carer. This means that their household income has reduced significantly.
Violet needs equipment to walk, play and stand. Just to be ‘able to’, like other children, and just to play with her Brother Henry. The list of equipment is long and as Violet grows, the list grows too. We thought that the Government help was there for children like Violet, but sadly as the News often shows, it isn’t.
Some of the bigger items have being funded by an amazing local charity, (which is why we are gifting them 10% of our donations).
Violet, shares a small room with her Twin Brother Henry.
Her equipment, her disturbed sleep and her very early mornings are hard on the little boy. He is an amazing Brother, but we know that both he, and Violet would absolutely benefit if she had her own room. Her own space fit for a Princess.
Also a Sensory-room full of lights, toys and learning equipment. A place where she can learn and grow. where she can improve her cognitive function and to be able to explore her desire to communicate.
Our aim is to raise enough money this year to extend the bungalow and to create the space and the equipment that Violet needs to flourish…. ￼