Only two years and three months after being born a healthy bouncing baby, little Mikhail was crippled by a disease that had taken the life of his sister Mikhaila Brown at age six.
Each child started growing normally. They crept, they walked and they said their first words until everything changed.
First, they began to lose their speech, they became weak, and soon they were unable to walk. As they got worse they became more rigid in their movement, and physical signs of abnormality became even more evident.
Unfamiliar with this condition, family, relatives and friends watched hopelessly as these two beloved children went from bouncing babies to crippled infants. Having never experienced any illness of this nature in their small rural community of Potosi in St James, community and family members started to raise questions.
“What is this? Is it a sickness or a curse?, were some of them.
Though largely unknown, both Mikhail and his sister suffered from Metachromatic Luekoystrophy (MLD). This is a genetic neurodegenerative disorder that is inherited as an autosomal recessive trait and is marked by the accumulation of sulfatides resulting in the loss of myelin in the central nervous system and leading to progressive deterioration of cognitive and motor functioning.
There are three types of MLD, each based on the time the symptoms begin. The types are, late infantile, juvenile and adult MLD. The most common form of Metachromatic Leukodystrophy, affecting about 50 to 60 per cent of all individuals with this disorder, is called the late infantile form. This form usually appears in the second year of life. Affected children lose any speech they have developed, become weak, and develop problems with walking. As the disorder worsens, muscle tone generally first decreases, and then increases to the point of rigidity. Individuals with the late infantile form of Metachromatic Leukodystrophy typically do not survive past childhood
“My daughter Mikhaila was diagnosed with this disease at 18 months old. At the onset, she lost the ability to walk and started creeping again. At first, this was strange for me and I took her to the clinic and asked the doctors if this was normal. The doctors told me that it is normal for a child to go back to creeping stage and they will have to keep an eye on her until she was about four”, recalled Maxine Tugwell Brown, the children’s mother.
Though this was deemed a normal situation, Mikhaila started to get worse at the prescribed age four and relatives, friends and neighbours started having more concerns and assumptions.
“By the time she got to four she started deteriorating rapidly, at this point my neighbors, my relatives and everyone around started getting concerned. Some even started saying it’s not normal and its obeah, an a somebody duh yuh pickney suh and yuh fi go out,” Maxine stated.
While Mikhaila started to get worse, Maxine was recommended to Consultant Pediatrician, Professor Robert Gray of the Kidz Klinik, in Kingston. At this point, some of their questions started to be answered but there was still no certainty as to the diagnosis.
Professor Gray concluded that the condition was a degenerative brain disease, but was still unable to give a name or recommend a treatment. However, in an attempt to find answers, Professor Gray suggested that Maxine visit the nearby Hope Clinic to do some tests. Tests came back and while they confirmed Professor Gray’s diagnosis, he still could not point to the specific kind of disease that was literally eating away Mikhaila’s life. Innocent Mikhaila endured the miseries of the disease until age six when she could fight no more and died in her grandfather’s care on September 2005.
Shortly before Mikhaila’s passing, Maxine gave birth to her third child, Mikhail Brown. Little Mikhail reached age 18 months and was a normal child. This progress gave his mother hope, until he was two years and three months and history started to repeat itself. Baby Mikhail started creeping again.
“At two years and three months I noticed Mikhail staggering again until he started creeping. I didn’t go to Cornwall Regional this time. I went straight to Doctor Gray”, Maxine stated.
In Jamaica, the doctors are unable to diagnose the illness and as such no research has been done to uncover how many children are living with MLD or have subsequently died. This ignorance causes even more grief to parents who are in need of all the information and support they can get. Fortunately, Maxine was given the opportunity to visit Miami Children’s Hospital and upon testing, Mikhail was diagnosed with Metachromatic Leukodystrophy.
Little Mikhail has now lost his sight and is also unable to hear sounds at a certain decibel. In addition, Mikhail also has digestive problems, as he is unable to chew solid food, his mother confirmed.
“We feed him on porridge, cereals and other soft, prorated foods,” the infant’s mother said.
“The FDA (Food and Drug Administration) did not approve of any treatment as such, because other children across the world now were diagnosed with the sickness. What they found out is that a bone marrow transplant that they are now working on may be able to help with this disease”, Maxine said.
There is presently no known cure for MLD. However, in recent years there has been an increased interest by researchers to study the disease. Several different areas of the illness are now being explored in the United States and other countries.
During their travels, Maxine found out that with a disease of this kind the child may live up to six years old, the age that Mikhaila died. This revelation was like a dagger ramming into Maxine’s heart.
“It is very traumatic for you as a parent, even on his brother Leon. He is sad most of the time because he says he doesn’t have a brother or sister he can play with because of the terrible sickness.
“Sometimes I too wonder why, because I am like the only person in Jamaica whose child is like this and it is very stressing. When I’m at work and I see healthy kids at school, I wonder what is wrong, why my two kids are like this, though the eldest one is good. There is even this child at school who is unable to walk and sometimes I just look at her and say, God if you had even given me mine like that I would be grateful,” Maxine said sadly.
Maxine had the misfortune of watching one of her three children die and daily she lives in fear of seeing the same happen to another. However, she tries not to allow herself to be overwhelmed by emotion, wanting to be strong for her child and hoping that one day he’ll be delivered from his pain and discomfort.
For now, Maxine finds strength in the support of family, friends and her unwavering faith in God, choosing to follow the advice penned by the late Charles Dickens: “Reflect upon your present blessings – of which every man has many – not on your past misfortunes, of which all men have some.”