Lucas and Louis Masiga look playful in just about every photograph their parents proudly show off. Awesome and loving boys is how their mother Juliet Masiga describes them.
“Lucas at eight years and Louis at five years are very sweet boys who despite their age seem to see through our struggles as parents. They put up a mature endurance of their own pain with uncompromising dedication to taking their daily cocktail of drugs; something that most adults would find challenging,” says Fred Masiga their father, in a text message.
Masiga is currently in India looking after the boys pending a Bone Marrow Transplant procedure for both of them at Artemis Hospital. After a sickly first three months the couple took their son Lucas for a health check-up and he was diagnosed with sickle cell anemia at four months.
When the second born son Louis also made four months, he was diagnosed with the same disease after a disturbed childhood with pain crisis in the joints, constant headaches, swollen fingers and falling sick all the time.
“They are very much similar to each other,” Juliet says, “they are those kinds of children that will give you the reason to fight on. They are very intelligent, loving and handsome boys. They do not only love us as their parents but also love their friends at school and their teachers at their school have always commended them for that.”
Transplant for the children
After being advised to do a bone marrow transplant for both two children by their doctors, the couple has embarked on a journey to get the best care for their boys amidst the financial challenges.
“The only curative measure for Sickle Cell Disease (SCD) patients is BMT using a healthy donor (sibling, father or mother) and it is a one time procedure, once successful, the patient lives normal and healthy,” says Dr Gaurav Kharya, who will perform the procedure at Artemis Hospital, India. He has so far handled 25 similar cases from Uganda.
“We have already spent a fortune. We have so far had two unsuccessful transplants for them and a series of blood transfusions. Following the transplant, Lucas has had three brain bleeds and the doctors say this is too dangerous. We appeal for as much help as we can get. Presently, well wishers are donating to Bank of Baroda account in the name Indian Association, account number: 9501010003059,” Juliet says.
Raising of the funds
The medical procedure for both the boy will cost the couple Shs400m, an amount they cannot afford without the goodwill of friends and well-wishers. Some money has been raised through the Indian Association in Uganda and the Indian Women's Association who have a keen interest in sickle cell care.
“We have already raised about $25000 which is an equivalent to Shs90m to be sent for the initial transplant for Lucas whose condition is urgent at the moment since he has already had three brain bleeds,” says Chirag Dave, chairman Indian Association.
Juliet speaks with such hope of the best, thanking the association, friends and relatives who have come to their aid so far. “It has not been easy since the first two unsuccessful transplants at some facility in India. We have changed the facility and we are now opting for Artemis Hospital where they are in the outpatient department under the care of their father.”
About sickle cells
According to the Indian Association’s research, out of the children born in Uganda every year, 17,000 of them are born with the disease.
Sickle cell anemia is an inherited form of anemia — a condition in which there aren’t enough healthy red blood cells to carry adequate oxygen throughout your body.
Normally, your red blood cells are flexible and round, moving easily through your blood vessels. In sickle cell anemia, the red blood cells become rigid and sticky and are shaped like sickles or crescent moons.
These irregularly shaped cells can get stuck in small blood vessels, which can slow or block blood flow and oxygen to parts of the body.
First aid for sickle cell patients
Dr Gaurav Kharya tips on the First Aid, maintaining and how to feed a sickle cell patient.
“Parents and care giver should be educated about the signs and symptoms of crisis. The earlier it is picked up and intervened the less the course and cost. For First Aid, of the frequent pain crisis is managed through proper hydration and optimising pain killers. If the pain doesn’t settle within 12 hours, patients should be taken for further examination by the doctor.”
Diet for sicklers
Diets high in meats and fatty foods tend to make sickle cell patients go into crises more. Try to eliminate meat from your diet completely, and if not, then try to limit your meat intake to small amounts a couple of times a week. Below are some of the foods recommended by Dr Gaurav Kharya.
1. Greens: Leafy vegetables like Kale, Spinach, dodo, Turnip Greens, cabbage, eggplant and all other greens are very good since they are high in folate aka folic acid, this aids in improving appetite, cell production, growth and red blood cell formation.
2. Brown Rice: If you must eat rice regularly, then switch to brown rice. This is one of the most energetically balanced foods. It strengthens the lungs and the spleen.
3. Garlic: Garlic is a great immune system builder, relieves cramps and helps to expel cold and dampness from your body by increasing your inner body temperature. The sickle cell patient needs this.
4. Milk: All milk products such as cheese, yoghurt, butter, and soymilk are very helpful to the patients of sickle cells.
5. Cayenne Pepper: Cayenne is another great detoxifier. It strengthens your immune system, disperses congestion, clears your sinuses, expels cold and helps to calm abdominal pains (by dilating the veins/arteries in the abdomen, increasing circulation, thereby increasing oxygenation.
6. Root vegetables: Root veggies like carrots, potatoes, sweet potatoes, yams, yucca root, African yam, cassava etc, helps to increase red blood cell production. You can bake, steam, juice or broil them.