22nd-29th April 2022

Nate, now 7 years old, was diagnosed with X-linked agammaglobulinemia (XLA) when he was 18 months old.

Nate’s first hospital admission was when he was just 5 weeks old. We narrowly avoided spending his first Christmas in St George’s Hospital, Tooting and were allowed home having had intravenous (IV) antibiotics, lumbar punctures and x-rays. After we left we fell into a pattern of roughly 3-4 week cycles of being unwell, high temperatures, GP visits and antibiotics. At around 8 months we were back in St George’s. Nate had pneumonia. A few days of IV antibiotics, released back home and then back into the same cycle.

Most of that time I had a bad gut feeling, not evidence based, more of a hunch. I remember getting to know the receptionists at our GP by first name. Nate, throughout all the sickness and coughing and drugs and high temperatures, was a happy, contented lovely, gorgeous little boy. He loved reading books – still does. He was an ideal patient and never complained at being poked, jabbed or examined. He regularly humbled us with his fantastic attitude to it all. Nate was already being seen regularly by the Paediatric Team and was taking an antibiotic everyday for urinary reflux. But the check-ups and constant drugs did not stop the cycle of illness, fever, and then more antibiotics.

By the time Nate reached 18 months he became really poorly and spent a few weeks in the Paediatric Intensive Care Unit (PICU) at St George’s Hospital after a terrifying night when he almost stopped breathing altogether. Nate needed to be on a ventilator to help him breathe. This was the most intense period of our lives together as a new little family and we don’t really like looking back on it as it still brings so many emotions to the fore. BUT – something amazing happened whilst we were in that unit. One of the doctors remembered us from when Nate was a tiny baby. He postulated the idea that Nate may have an immunodeficiency and he put his money on XLA. As far as I was concerned this was progress. This was a name. This meant treatment. This meant that there could be improvement and Nate wouldn’t be so sick all the time. This also meant that I wasn’t failing as a parent, an idea that I just couldn’t shake off. It felt like I was doing something wrong – no parent expects their child to be sick all the time and we could never do the type of things other mums did with their babies. We booked swimming classes and never got to more than 2 lessons. Nate was the child with the constant runny nose, gorgeous and cute button nose, but runny nonetheless.

The doctor came and spoke to us about XLA and the tests were done. When the results came back that Nate did have the condition my honest emotion was one of relief. Treatment began before the diagnosis and there was a steady improvement week on week. Slowly the horrors of the illness that put Nate into the PICU soon dissolved as we all got on with the business of having a toddler in the family and juggling life/work/play.

Nate is an inspiration to us everyday.

Read the full story here.

Credits: Primary Immunodeficiency UK.

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