Here at Banana Moon Baddesley Ensor we see children through all walks of life but never in our wildest dreams that one of our children would be diagnosed with an extremely rare illness. Joann, our Nursery Manager, spoke with Ria and Liz (Jaac's Parents) to find out more about his condition and we wanted to share his experience with you to help spread the word about aHUS. Please read below to hear Jaac's parents story...

 

"Jaac’s aHUS journey started in September 2021. Jaac was taken to hospital after becoming ill, vomiting and seizures this turned out to be something more serious than the hospital thought.

 Jaac was then taken to the George Elliott hospital where they began to treat Jaac for meningitis and sepsis. Further tests revealed that Jaac’s situation had become life threatening we were given a 6 hour window to save his life and told us to prepare for the worst. Jaac was transported to Birmingham Children’s hospital by Critical care ambulance At Birmingham more tests where carried out and Jaac’s kidney function had shut down.
 

Jaac was taken to have emergency surgery to have a dialysis catheter placed and also a central line in his neck. Unfortunately, dialysis did not work and Jaac was transferred to the ICU where they began to filter his blood to try save his life. 

Behind the scenes, an amazing team started work on a presentation to get Jaac a drug which needed to go to panel & the National Renal Complement Therapeutics Centre (NRCTC) for approval.

After several weeks in ICU Jaac began to improve. 

Jaac was given the diagnosis of Atypical Haemolytic Uraemic Syndrome (aHUS) which is an ultra-rare disease caused by a fault in the complement system. 

The most commonly affected organ is the kidney, but all organs can be affected. Left untreated it can be a life-threatening illness and the majority of people would develop end stage kidney failure. Only 120-130 people in UK are currently diagnosed with aHUS. 

This is an incurable, life limiting disease and we are extremely grateful for every day we spend with our warrior.

Jaac can struggle with his day-to-day life as he becomes more lethargic the week of treatment and going forward his joints will  begin to stiffen because of the disease. Jaac now has a vascular port and receives treatment fortnightly to keep him stable. 

Jaac is such a happy, cheeky little 2 year old boy & we are extremely blessed to have him."

Jaac really is an incredible little boy who never fails to surprise us at all nursery with how brave he is. It's been an eye opening experience for everyone involved and we all count our lucky stars every day. Thank you to Liz and Ria for sharing their journey with us.

In order to raise awareness of aHUS at Banana Moon Day Nursery Baddesley Ensor, we will be encouraging all of our families to wear something blue for the week beginning Monday 19th September until Friday 23rd September (the actually awareness day is on Saturday 24th September). There isn't a cure for aHUS so we would like to do a collection to donate to the aHUS Charity to help them continue their research!