Watching your child suffer is the worst nightmare a mother has to endure. For 23-year-old Sarah Gillin, it is a waking nightmare she has to cope with every single day. Pam Wilkinson reports.

LITTLE NIOMI Gillin is only 23 months old and is undergoing intensive chemotherapy treatment in St James's Hospital in Leeds for a rare form of cancer.

Mum Sarah Gillin, who sits devotedly by the bedside of her sick daughter, says: "I have to be strong for Niomi".

She tells how her young daughter fell ill. "Niomi had been fit and well until I found a lump on her head. When it hadn't gone down after a couple of days, I became concerned and took her to the doctor," says Sarah.

"I just thought she had bumped herself, as toddlers do. Niomi was a very active and lively child, who ate well and enjoyed life. She was a very happy little girl and intelligent for her age.

"The doctor shared my worry and sent her to Airedale General Hospital for X-rays to be taken of Niomi's head and body. Results showed that it could either be a form of leukaemia or some kind of cancer, as the lump had already eaten away part of the bone in the skull and had spread to other parts of her body.

"I had to bring Niomi immediately into St James's, in order for her to have a biopsy carried out on her head. The first diagnosis was not conclusive and she had to return to hospital for a further biopsy to determine the type of cancer. The positive results showed it was a rare anaplastic cell lymphoma. I understand that there have only been eight children in Europe who have suffered from this disease."

The lump was discovered in February, but due to the biopsies it was March before the little girl could begin to have chemotherapy treatment.

"The first time we came to hospital we were here for four weeks, as after the chemotherapy Niomi developed an infection. The next treatment went very well and I was allowed home with Niomi for three days.

Unfortunately she got a temperature and we had to come back to St James's once again. After another five days of anti-biotics, we were allowed home for four days last weekend and are now back here for another course of treatment", says Sarah.

When I met the little tot, she was sitting up in bed looking at a picture book, with her mother's arm around her. So far the prognosis is hopeful. Niomi is responding well to the treatment, although she has lost all her lovely dark hair and has suffered continually from sickness and has been extremely distressed.

"The ball in Niomi's skull is healing, and the glands in her chest have also reduced considerably. She had a lot of swelling around her heart, which has also improved. She seems to be doing quite well, but unfortunately the treatment has to make her very ill before it makes her better, but I am hopeful for the future," adds Sarah.

The relationship between Sarah and her little daughter is very strong. Sarah spends 24 hours a day at Niomi's bedside, often not even going to sleep in the room allocated for her at the hospital.

Most nights, Sarah curls up beside her sick child and during the day she looks after all her needs, except for the specialised nursing treatments. She feeds her, changes her nappies and cleans her up. The devotion Sarah shows to her daughter is obvious to all who see them together and when she speaks of Niomi her face lights up with love. "She means everything to me. We have been together constantly since she was born. We used to have little picnics in bed, watch television together and play games. Now I just want her to get well so I can make her life happy again," says Sarah.

"If I had the money I would love to take her somewhere quiet where she could play in peace, as even if she does get better she will always be liable to infections. The chemotherapy treatments will have to continue for years, with regular monitoring to see how the disease is reacting. I just long to have my little girl back home, leading a normal life. This is a very intense course and she will be in and out of hospital regularly for the next two years."

Sarah says being a single mum has made a special bond between mother and daughter.

"Although I never intended to be a single mum, having Niomi has been the most wonderful thing which has ever happened to me."

Sarah has bravely made a good life for herself and Niomi, and her house in Keighley is where they are happiest. "I just long for Niomi to be a normal little girl without this horrible disease", she adds.

"Niomi has always been a very, very clingy child. If I leave the room she will cry for me. We have a very special bond. She knows if I am upset and the only way we can make each other better, when we are at home, is to lie together on the settee and cuddle up and watch her favourite videos. I love her more than anyone in the world and I just hope my will for her to live will be strong enough to bring her through this ordeal".

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