In late September 2023, Jack was aged 2, the youngest one of my 4 children. He was the normal bouncing 2-year-old with a character larger than life, and loved his food and toys.

Unfortunately, he became poorly with cold-like symptoms and then suddenly became paralysed from the waist down.

We took him to the hospital and after lots of tests was told it was infectious arthritis and was sent home with antibiotic medication.

Just a few days later, Jack then came up in a rash on his legs very similar to chicken pox, and by the next morning Jack’s rash had scabbed over and black bruises appeared.

We went back to the hospital again sitting on the A&E departments floor for hours.

Jack then got admitted to the children’s ward and after days of monitoring and tests, we were told he had something called Henoch Schönlein Purpura (HSP).

We were told there isn’t a cure as not enough is known about it but it will go away by itself after one or two symptoms, but they will have to monitor his kidneys over a year as worst-case scenario it can affect them.

We then over a 3-week period went back and forth out of the hospital with open access to the children’s ward because unfortunately for Jack he had every symptom going.  

Jack then turned 3 years old on the 26th October, at this point he was paralysed everywhere even to the point we had to hold him up for him to blow the candles out on his cake and swelling of his body and face. 

So we returned to hospital were we then had been told Jack had also developed Nephrotic Syndrome with the HSP. They then needed us to go from Barnstaple Hospital to Bristol for a biopsy to see what damage had been caused to his kidneys. 

The biopsy found that Jack had progressed to also having Acute Kidney Disease.

The time between October and Christmas saw us spend more time in hospitals than at home, and with autistic children at home too it was difficult to maintain normal levels of life for all.

Jack was placed on high levels of steroids and had infusions and medication galore to bring the Nephrotic Syndrome into remission.

Because of the steroid use, it meant his immune system was as low as it could be and we had to remove him from nursery until September 2024 as something as little as COVID-19 or chicken pox could kill him.

Skipping forward to now, Jack’s Nephrotic Syndrome and HSP remain in remission and he can run, climb and skip.

We do a cupboard full of medicine twice daily, we check his temperature, fluid intake, and outtakes and monitor his weight all in a daily diary.  We also attend hospital weekly to see his amazing renal doctor for blood and urine samples.

Unfortunately for Jack all though he appears well, his protein levels have not improved so at the end of June this year we will return to Bristol for another biopsy to see what’s next going forward as medication unfortunately isn’t doing all it needs to. 

I have chosen to put my Best Foot Forward for the National Kidney Federation because…

No 1:
I’m in the last year of my 30’s so why not attempt something out of my comfort zone?

No 2:
Jack is home-schooled with me at the minute and the past year has taught us only too well that tomorrow is not promised. This challenge is a great excuse for us to get out and about whilst everyone is at school exploring Devon whilst raising vital funds for such a wonderful charity. 

Much love 

Maz and little Jack Jack