Annabelle's Story

Imagine your little child had skin so paper thin and delicate that it flaked off all over her body each day leaving weeping sores. Imagine a constant routine of bathing, creams and bandaging - a never ending torment for your brave tot to endure and a battle for survival.

It is a nightmare most of us could hardly imagine. Yet this nightmare is reality for tiny Annabelle Whitehouse, her mum Sonia and dad Paul.

Because four year old Annabelle suffers from Icthyosis - a disease so rare only three people in a million have it and so terrible it means she can literally shed her skin overnight.

The four year old endures constant scaling of the skin all over her body and has to tolerate a relentless routine of daily treatment. It is an ordeal which places huge strain both on Annabelle and on her family who have to care for her constantly.

Mum Sonia said that when Annabelle was born she was coated in a thick layer of skin and looked completely disfigured. The couple’s first child Lydia had been born normally and does not suffer from the condition so nothing had prepared them for the shock that was to come.

“It was like being hit by a freight train, we were in total shock,” said Sonia.

“You just don’t expect anything like that. We wondered how she could possibly survive. When she was born it appeared as if she had no eyes, ears and nose. Her face was distorted, it looked quite horrible. But when you see her now she’s a beautiful little girl with a lovely personality.”

Doctors fought to save Annabelle but her condition means the hard work of caring for her goes on each and every day.

Dad Paul said: "Annabelle can shed her skin overnight so we have to keep it moist. She has a long bath then we cover her in cream every three hours. We do her hands and face more frequently."

As parents of a child in this awful situation just who would you turn to for help?

It is in cases like this where the WellChild nurse can become a lantern of light in a tunnel of darkness.

The community nurse introduced the family to WellChild nurse Jo who came to meet them and soon began work making life as bearable as possible for Annabelle and the rest of the family.

The family relies on help from Jo who bandages Annabelle, organises carers, and teaches Annabelle’s parents and nursery staff to help the little girl.

Because of Jo’s help, Annabelle is able to go to pre-school and is looking forward to starting school.

Sonia said: “Our WellChild nurse Jo is great, she has been a huge help. If it had not been for WellChild Annabelle would not have been able to go to nursery and lead as normal a life as possible.”

“Jo keeps everything rolling, she is a great person and a great shoulder to lean on. WellChild are fantastic!”