A Mother And Son’s Extra Special Bond
Zoey and her son both suffer from the same rare blood condition...
Iwas diagnosed with hereditary spherocytosis (HS), a rare blood condition, when I was born. Red blood cells can be destroyed, leading to anaemia, jaundice and gallstones.
My dad, Neil, then 22, had it. Which is why I’d been tested.
My parents didn’t let it get in my way, and I was happy, but tired, plus I’d catch every bug going! When I was 17, in 2005, my spleen became enlarged and had to be removed, which is common for people with HS. Unless it’s removed, it can protrude into the tummy. But without my spleen, I’d be on penicillin forever, as my immune system was compromised. But life moved on, and in 2007, I met Shaun, 34. Though they could inherit HS, I really wanted to have children. In February 2012, we had our daughter, Willow. Although she was jaundiced, doctors didn’t think she had the condition. Our son, Eden, was born in August 2013, but he did have HS. A week after he was born, Eden seemed listless, and it was difficult to rouse him. We rushed him to Pilgrim Hospital and there, tests
I WON'T LET HS GET IN MY BOY'S WAY
showed his haemoglobin levels were low.
Ôeden needs a transfusion,’ a doctor said. I was so scared for him. A couple of days later, I was allowed to take Eden back home.
But, like me, he tires easily and needs to have lots of naps.
He picks up chest infections, too.
In November 2013, he was even hospitalised with bronchitis.
I’m always taking him to the doctor to check his haemoglobin levels aren’t dropping.
And one day, it’s likely he’ ll need his spleen removed, too.
But I’ll be able to answer his questions.
And, like my parents did with me, I won’t let HS get in his way.
I’m sharing my story as not many people have heard of HS, and despite having it, I’m still learning 27 years down the line.
I only hope that people consider giving blood.
It’s not just people who’ve been in accidents who need transfusions...
People like me and Eden do, too.
It’s not too much to ask for.
Like me, he tires easily and needs to have lots of naps