tougher.

Physically restricting, and at times very painful, the disease does not stop a child's life or development, but it does place certain limitations upon it.

For instance, children with the disease must be careful not to over-exert themselves. Otherwise, they can precipitate a crisis, which will put them in bed (and/or hospital) for days or weeks at a time.

Sickle cell children are also prone to infection. Frequent colds and sore throats are characteristics of the disease. Slow growth, painful joints, and hand-foot syndrome (when hands and feet swell, become hot, red and painful) are other features.

The disease affects the oxygen-carrying red cells of the bloodstream. While there is no known cure for sickle cell anaemia, education and awareness can make the lives of the sufferers -- who range from infants to adults -- and those who interact with them, much better.

For that reason the Department of Health, Social Services & Housing has decided to make "Growing up with Sickle Cell Disease'' the theme of this month's Sickle Cell Month awareness campaign, with the primary focus on the mental, emotional and social health of afflicted children.

"You allow a child to do what they are capable of doing. You don't treat them like an invalid and you try not to treat them differently,'' the department's health co-ordinator, Mrs. Ivena Laurenceo, explained.

"Sickle cell often precludes full participation in physical activities at school, so it is really important to ensure that the mind is developed to its maximum potential. Because they have to deal with pain so much as part of their growing up, we want to make sure that the emotional health of these children is intact.'' Acknowledging that very young children must be watched more carefully, the health co-ordinator said that "as they grow older they know their limitations''.

Typical is 17-year-old Odia Vassell, who was diagnosed with the disease at 11 months old. Today, she is a top student at the Bermuda Institute, and wants to become an electrical engineer.

"I never participated in gymnastics because the few times I did I got sick,'' the pretty teenager recalled. "At the same time, I'm not an athletic person anyway so I didn't miss it.'' Swimming in the sea also gives her problems -- but happily not a pool. Odia compensates for her lack of sporting activity by "keeping busy with community service -- things that aren't too taxing physically''.

As with other sickle cell anaemia patients, her crises involve bouts of severe pain -- in the joints, limbs, chest and abdomen. Sometimes, it is so bad that hospital treatment is required.

Crises are caused when large numbers of sickle cells are present in the blood.

They tend to pile up and stick together in blood vessels, making it difficult or impossible for the blood to circulate. This causes drastically reduced circulation and oxygen shortages, especially in the extremities. Crises can be brought on by infection, fatigue, unusual stress, over-exertion, and high altitude.

"A crisis can last a couple of days or a couple of weeks,'' Odia explained.

"You have to rest and drink a lot of fluids.'' Like others who have grown up with health problems, Odia look at her illness philosophically, and is determined to lead as normal a life a possible.

"It takes a lot of faith in God to deal with it, but I don't concentrate on the sickle cell part of my life,'' the teenager said. "I have learned what I can do and not do, so I don't have to think twice about what I should or should not be doing. I watch my diet for my own health reasons. In a way, you can say it's discipline. You have to set your limitations and live within them. I don't look back and I don't worry about the future.'' In fact, Odia says she often has to reassure her friends, who are more cautious about what she should be doing than she is herself.

"I have to tell them it's okay. You accept sickle cell as part of your life.

Everybody has something that may set them back in life, so you just deal with it and move on.'' And moving on for Odia includes planning to go to college, where she hopes to gain a degree in electrical engineering.

Another thing which fuels her optimism is the hope that, as she gets older, the painful crises will lessen.

"The growth process promotes more crises, so the good side of getting older is that, for many, the crises lessen,'' she explained.

For 11-year-old Jonathan Burgess, that day's a long way off, but in the meantime the Harrington Sound School student is also getting on with his life as best he can.

Diagnosed with the disease at three months' old, Jonathan has battled a lot of set-backs in his young life, including (like Odia) the removal of his gallbladder, pneumonia, ear infections and many colds.

Yet, despite the long periods of his life spent in hospital, Jonathan is also a top student at school -- and like many children with physical limitations, he has turned naturally to other avenues to compensate.

Blessed with a big, bright smile and a lively mind, the youngster loves nothing better than reading.

"He reads all the time,'' his mother Cheryl said proudly. "He's been reading newspapers since he was five.'' During one of his hospital stays, despite being very ill, his mother found him happily reading an encyclopaedia.

For all that, however, Jonathan's thoughts for the future don't really centre around books. Typical of his age, he dreams instead of being a baseball player when he grows up.

Unlike Odia, he enjoys participating in his school's sports programme, but tempers his enthusiasm with a measure of common sense.

"For example, when we have running if we have too many laps I do half of them,'' he explained. "If I can't do more of something I stop. You just do what you can.'' Swimming also presents problems: "I get cold and start sneezing, so that can be hard,'' he said ruefully.

Like adults, neither child relishes the idea of being in hospital, but both have found a certain compensation in their frequent visits.

"When we go back the nurses are so friendly they treat us like old friends,'' the children explained. "They remember our names, and say things like, `Oh, here's Jonathan back again'.

But what has it been like for the parents of these children? For Odia's mother Claudette, a registered nurse, it has also been a long road, and one where she became accustomed to doing everything for her child. Now she must face the reality that her daughter is growing up.

"When she was younger I did everything for her, but now I have to learn to let go. It's not easy,'' she admitted.

As if to prove the point, Odia gently reminds her that she took a five-week trip abroad without her mother, and successfully dealt with a crisis during that time.

"The trip was a learning experience,'' the teenager said firmly. "Now I'm looking forward to taking even bigger steps.'' For hotel worker Mrs. Burgess, not only has she had to cope with her son's illness, and raise his twin sister who carries the sickle cell trait, but she herself has battled the disease since childhood.

Holding down her supervisor's job while dealing with the medical problems has stressful, but she is thankful that she can count on her mother's support and assistance, when required, to see them through.

STILL SMILING ... Despite having sickle cell anaemia since babyhood, Jonathan Burgess, 11, and Odia Vassell, 17, have a lot to be happy about. Both are good students and enjoy life despite the limitations of their disease.