A rigorous drug and physiotherapy treatment routine has become part of her life.

A positive Caorline is determined that the disease will not take over the whole family's life.



CAROLINE Smith will never forget the day she learned her daughter had cystic fibrosis.

Medics gave her the news when Milly was three weeks old.

"My health visitor was coming to see me but when I opened the door there was another.

"I said 'do I need to be worried that there's two of you?' The look on their faces was enough.

"I was just floored."

... more feature stories from Mail2

Initially the mum-of-two was stunned.

But six months on, the 35-year-old's life has changed dramatically.

She has to make a daily judgement over whether it's safe to take Milly to places where there could be contact with a lot of other children.

Something as simple as the common cold could make Milly very sick.

Caroline said: "It's not that I can't go out but it's all about judging the risks.

"I tend to go to play areas when it's quiet and not at weekends.
"I have to avoid other children and toddlers. It's a shame."

If a bacterial bug gets caught in the sticky mucus in Milly's lungs, a symptom of the disease, it can grow and turn into a lethal infection.

But Caroline is determined that two-year-old son Alex will not miss out through over cautiousness.

She said: "I don't want Alex to be affected by Milly's cystic fibrosis any more than I want Milly to be."

Because the disease is so unpredictable, Caroline, and her husband Paul, 41, know that, at any point, their little girl could take a turn for the worst.

"You can't worry about things that may or may not happen," said an undaunted Caroline. "You don't know if, or when, it will happen or how bad it will be."

Just before Christmas the family, of Goldcrest Close, in Hartlepool, was dealt a blow when little Milly developed an infection.

She was hospitalised for eight days and had a tube to feed antibiotics into a vein in her head.

To fight the infection Milly undergoes a daily routine of four doses of antibiotics. She will remain on one of them for life.

She also has to take an enzyme called Creon to help her body digest fat and she undergoes twice-daily physiotherapy sessions.

Caroline said: "We bounce her up and down and throw her around on a gym ball.
"At the moment the physiotherapy is more preventative than a treatment but you can't stop it because she will get out of the habit.

"It does become part of your life and it's surprising how much effort goes into daily life.

"You can't just get up, get your breakfast and get out."

Caroline cannot even share her experiences with other parents whose children have cystic fibrosis. Sufferers are more likely to infect each other and must never meet.

"With CF you don't meet at all because they could infect each other," said Caroline.

"So when you go to the clinic you are given your own room so you don't see another parent and don't get to talk."

For now though Milly is doing well and the family's spirits are up.

Caroline has been involved in fundraising for the Cystic Fibrosis Trust.

Its aim is to fund research into gene treatment that could cure or at least improve Milly's condition. The families have raised £3,600 so far.

Only last week, the St Bega's Mother and Toddler group raised over £1,500 for the cause.

Caroline said: "You have got to concentrate on the good things and giving the kids the best possible start and getting exercise and having fun

"Hopefully a cure is just around the corner.

CYSTIC FIBROSIS (CF ) FACTFILE

• CF is the most common life-threatening inherited disease.


• It is caused by a single faulty gene that controls the movement of salt in the body.


• For a baby to be born with CF, both parents must be carriers of the faulty gene.


• The internal organs become clogged with thick, sticky mucus, resulting in infections and inflammation making it hard to breathe and digest food.


• The channels that carry the digestive juices can become clogged with sticky mucus. The enzymes then build up in the pancreas which becomes inflamed and damaged over time.


• Most people have to take an enzyme to help digest food.


• The right diet for people with CF is high in energy as a good body weight can help fight chest infections and act as a reserve should the sufferer become ill.


• Exercise is very important as it prevents deterioration of the lungs. Children with CF should exercise as much as possible


• The CF Trust helpline offers practical and emotional support. It can be reached on 0845 8591000.