In her nine short years of life, little Paula Barahona has suffered 36 fractures (not counting continually breaking her hands and feet) and undergone seven operations. Even in the womb, she had a fractured femur and humerus, although the doctor who was performing the ultrasound told her mother, Laura Agenjo, that what he was seeing could have been “distorsions on the screen”.
Unfortunately that wasn’t the case, and Paula was diagnosed with osteogenesis imperfecta, a rare condition known as ‘brittle bone disease’ because for those who suffer from it, even a graze can cause a fracture. It is a congenital disorder, characterised by excessively fragile bones, and is caused by a deficiency in the formation of a protein, type 1 collagen.
Laura says the birth was natural, which was surprising, but at the time the doctors were not aware of Paula’s condition. Now that technology has advanced so much and ultrasound images are much clearer, such babies are always delivered by Caesarian section.
When Paula was born, both knees were dislocated; when she was two months old she broke a femur; she has had surgery on her navel because the weakness of her skeleton also caused hernias. For her, fractures and operations began before she was even born.
However, far from staying at home, Paula wants to enjoy life like any other child. She goes to school and tries not to miss any of the activities. She attends a private school, the Atalaya, where her family pay for her to be assisted by a carer.
“She can’t go to a state school because there is only one carer for two or three children with special needs and Paula needs somebody with her all the time, because the slightest bump can end up as a fracture,” says Laura, who visited several private schools in Marbella to find the one which was most suitable for her daughter.
She is keen for Paula not to miss any event on the social calendar of a nine-year-old girl. For example, at last year’s annual fair, she dressed up her wheelchair to make it look like a horse and Paula wore a traditional frilly dress. “I adapt everything for her so she can enjoy things like any other girl of her age,” Laura explains.
Recently, Paula, her parents and a group of fire fighters and members of the Marbella Climbing Club (CEM) went on a walk up La Concha, the mountain behind Marbella.
“It was something Paula has been wanting to do for some time,” says Laura, who admits that she couldn’t relax until they reached the summit. Any brusque movement could have resulted in another injury for her daughter.
Paula made the trip up the mountain in a backpack which was carried by her father and the climbers in turn. “She did some small stretches alone, on foot, though,” says her mother, proudly. It is a difficult route even for experienced hikers, but especially so for a young girl with this condition.
It was three hours and 20 minutes of hard going, especially for those who carried Paula in her backpack, and another two and a half hours to return. She is very happy now, though, because she has fulfilled one of her dreams: she has climbed La Concha. Once at the top, feeling more relaxed, she rested on the seat which the Piel de Mariposa association had placed there after a fundraising walk with the Marbella fire fighters. The association also collaborates with Paula’s family.
“She is incredibly determined; she is a very happy and optimistic child and she copes with the illness better than we do,” says Laura.
May 6th is the Day of Osteogenesis Imperfecta, and to make the condition better known and raise funds for research, Paula’s parents have organised a walk, which they are calling the “yellow wave”, because that is the colour reference assigned to the condition.
The walk will be from the Refugio de Juanar to the viewing point. It will be much more comfortable than the one Paula did up La Concha, and those taking part will be able to enjoy incomparable natural scenery. It costs 10 euros to take part, and in return the walkers will be given a bag with a T-shirt, sandwich and bottle of water. And, of course, the satisfaction of being able to help Paula and others with ‘brittle bone disease’.
However weak she may be physically, Paula Barahona is determined to get the most out of life and enjoy it as any young girl should.