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I have 3 sons, the oldest is 18 and just started university and he has SCD. Twin boys aged 16 going on 45 with one having SCD while his twin was AA, not even AS. We call him selfish cause he could have swapped with his twin brother while in the womb as he can afford it with his two A’s, but seriously it was a puzzle even for the doctors. He keeps asking for forgiveness but no one in the family cares to forgive him. My wife and I are the same age and knew we had the sickle cell trait before we got married. It was tough but having dated for six years and with a quack daughter telling us about a new injection that suppresses the trait and increases the odds from 1 in 4 to 1 in 40, we got sucked in and decided to have just the one child and no more. Took a while for my wife to successfully carry a pregnancy to full term having suffered 3 miscarriages but eventually our son arrived seemingly hale and healthy. We decided not to do a test for obvious reasons- we were cowards ok?- but he was so healthy and he wasn’t even sick for a day before his 2nd birthday. Phew! How we rejoiced. Of course because she’d had a hard time conceiving we weren’t too careful about using contraceptives, well that’s putting it mildly, we didn’t use any at all. I mean what are the odds she’d get pregnant after 6 years of sexually charged courtship and two years of trying desperately? Well, we visited Paris for a week and after about a month or so she felt a bit unwell and decided to see a doctor and dang, right on the screen we saw the two little critters fighting each other and that set the trend of their relationship till today. Anyway she was already 22 weeks gone and not a hint, apart from complaints of feeling lethargic some days in the morning, but not enough to stop her from going to work. She was married to that job, then the kids, the nannies and there was no space left for me, I became an appendage, and a disposable one at that and no matter how much I pulled long sorrowful glances her she picked up on nothing, I then adopted the nickname invisible and that was way before Mr Invisible became a star.

My sons have been fairly healthy with no major crises for some years and admissions, except last year when the youngest suffered a chest infection and needed hospital care for a few days. Our eldest have been in reasonably good health, able to do what his mates do, though not as much. But they are fairly happy kids and feel no stigma about their health condition and why they can’t do as much as they would like. So emotionally and psychologically they are fairly grounded, except when he became 18 and he allowed me to be there when consulting with the adult ward doctors and nurses for the time and the doctor explained that one of the side effects of hydroxycaramide was low sperm count, he was completely rattled and wanted off hydroxycarbamide immediately. You see he just got hooked up with a carribean beauty and he was not ready to jeopardise his street creds. Anyway we calmed him down and made him understand the different options that can be used to correct this when he’s ready to have a child. I can’t imagine what his younger brother will do, we will probably put restraints on him before discussing that, otherwise he’ll turn the hospital to a wreck.

Then there’s the first year of University, the parties, raves, my son attends all of them. We’ve sat down together as a family to agree on boundaries; he’s allowed a shot of spirits or a cocktail and nothing else. He has to have a full bottle of water with a slice of lime or lemon to ensure he stays hydrated and he drinks only from a water source that we know. And he calls immediately if he feels a tiny bit unwell. And finally, we also discussed with his circle of friends and ensure he sticks within the boundaries. We felt he’d be embarrassed inviting his friends over to emphasise the seriousness and likely consequences if they fail to watch out for him, but to our surprise he didn’t even consider saying no cause like he said he knows we are doing all we can to ensure his well-being. My wife and invisible me were shocked at his understanding and maturity.

So that’s a short biography of me and my family. Some parts of it may read funny but it’s deliberate. The ability to laugh, to remain positive has seen us through a lot of hard times. You have a medical condition but never feel stigmatised or allow anyone to make you feel that. Be quick to friends, teachers, anyone that cares to know about your limitations and the reason for it. Remember there are others coping with worse and with proper care and self awareness you can live a normal life as a teen, young adult or adult, but within boundaries, never push yourself too hard or be competitive in nature, that won’t help you stay healthy. Finally for careers and family members, there are milestones that must be successfully attained by your loved ones, and each milestone comes with it’s own challenges so be prepared. Patience, empathy, understanding and of equal significance if not more, a sense of humour. It lightens the load you and your loved ones have to bear.

So I pray for courage, good health and a cure for SCD which I know is coming sooner rather than later.

Stay strong and be grateful always for without that you’ll succumb to despair.

Love you all