‘Bad’ genes, blame games and the cute little blond puzzle

Karen* and Jonah* were college sweethearts who cemented their love with marriage, two years after graduation. Their white wedding was witnessed by friends and family, who were not let in on the couple’s little secret – the bride was three month’s pregnant.

For the young couple, life couldn’t be rosier. They were in love and it showed. Jonah accompanied his wife to every clinic and ensured she complied with all of the doctor’s instructions. The pregnancy was smooth and they even got to go away on a delayed honeymoon to Zanzibar when they were six months along.

The big day finally arrived when their little bundle made his entrance into the world. In the throes of labour, her eyes shut tight, Karen gave a final huge push and her son was born.

Jonah was the first to set eyes on him and he was taken aback. His son was blond! The boy was otherwise perfectly normal, two of everything paired, a little mouth that was yelling loudly in response to the midwife’s toweling, but his hair was blond.

Two days later, Karen and Jonah took baby Leone* home. Leone was born with albinism. The couple had received a fair amount of counselling at the hospital but it was nowhere close to preparing them for the social onslaught that would follow. Despite their son being perfect in every other way, members of their family and their social circle didn’t see it that way. Plenty of uncomfortable comments were made, both behind their backs and to their faces.

Their tranquil space was disrupted beyond measure. All the couple wanted was to enjoy their son in peace. Amidst dealing with colic and disrupted sleep, the last thing they needed was curious family and friends asking what went wrong with the baby yet the parents were normal. Both sides of the family blamed the other for bad genes. What they did not realise was the kind of negative pressure they were putting on the young parents.

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Over time, the couple became reclusive, moved to a different neighbourhood for a fresh start and even stopped going to church. The strain of coping with albinism with limited support wore them down. Jonah would stay late in the office while Karen was immersed in trying to protect her baby from the big bad world.

Leone grew up strong and healthy, breastfed well, religiously saw his paediatrician, got all his vaccines and gained weight beautifully. He was the cutest little boy and looking into his cute pale eyes tugged at his mother’s heartstrings. He had a nanny who adored him and saw way past his skin colour. His dad, however, took a really long time to truly face up to his son’s condition. This strained the marriage and the fights with Karen started. They would argue behind closed doors over the most insignificant issues. One evening, he packed a bag and walked out of home.

Karen was heartbroken. Her son was only two. In the midst of her pain, her support came from the most unlikely source – her brother-in-law, Simon. Simon was in his third year of medical school. He had taken time to understand his nephew’s condition. He sat down with Karen and explained it in layman’s terms, which her doctors had never been able to communicate. He accompanied her to the ophthalmologist when Leone needed spectacles and made sure he never lacked for sun-screen and fancy hats and caps.

Simon managed to get through to his brother. He made him understand that albinism is a genetically inherited disease from both parents carrying recessive genes, hence the parents would appear normal. Jonah learnt that his son was unable to make melanin, a protective pigment that gives colour to hair, eyes and skin, but would not die from his condition. That he would have problems with his vision but that could be remedied with special spectacles.

That he would always protect his skin from sunlight to prevent sunburns and reduce the risk of skin cancer, but would otherwise have a normal lifespan.

Jonah and his wife realised it was important to be there for Leone in more important ways than fretting about the medical aspect which was less threatening. They chose to empower Leone to face the unpredictable, prejudiced world he would grow up in. They realised that Leone’s problem would not be his skin, but what society perceived of it. To help him, they were stronger together than apart.

Today, Leone is an intelligent, well-rounded kindergartener with the curiosity of a regular five-year-old. He loves riding his bike and swimming in the late evening when the sun has gone down. At this point, he may not appreciate the doors that those who have gone before him like Goldalyn Kakuya have opened for him, but someday when he is older, he will be grateful for their legacy.

As for his parents, peace of mind in accepting that they cannot change who they are or who they bring forth has helped them embrace life. This year, they look forward to giving Leone a sibling. Their mantra is: colour is skin deep, it doesn’t change the depth of a parents’ love!

*Names have been changed to protect privacy