Noah’s mum, Becky, was convinced something wasn’t right with Noah straight after birth. But after being told many times by the doctor that he was fine it took an emergency trip to A&E, after projectile vomiting blood on a car journey home, for him to be diagnosed with the very rare condition Primary Hyperoxaluria (PH1) at 14 weeks old. (Noah is just one of six children diagnosed with this condition in the UK.) If left undiagnosed and untreated this condition would result in all of Noah’s organs calcifying.
Hayley found out that Ariana had kidney problems during her pregnancy, but they didn’t know to what extent. Ariana was born a week early and diagnosed with Renal Dysplasia, which means that one of her kidneys hadn’t developed properly. In addition, her birth was quite traumatic; she had a dislocated hip, a collapsed lung and one of her kidneys had multiple cysts.
Becky and Hayley met within the first year of their children’s lives on the Dialysis Unit at Bristol Children’s Hospital. Ariana and Noah are in the unit for the same treatment, and remain bright and bubbly, but their conditions come with many complications. Their feeding tubes and main lines into their hearts come with risks, their blood pressure is never stable, and they wear out very quickly.
Being on the unit at the same time as each other means that Becky and Hayley became firm friends very quickly, supporting each other through additional complications that arose – they now can’t remember a time when they weren’t friends.
Ariana and Noah are also the very best of friends, causing crazy chaos wherever they go when they’re together and holding each other’s hands when they’re having ‘off days’.
Due to their conditions making them immunocompromised neither of them are used to big groups of children their own age so having each other as a buddy is so important for their wellbeing.
Jessie May came into their lives within both of their first years, and where possible try to synchronize Ariana and Noah’s visits so that Becky and Hayley can have time together as friends to focus on themselves.
While we were talking, we asked Becky what Jessie May means to her and her family, and this is what she had to say:
“No parent expects to go through this. When they’re pregnant I think every parent says the same thing; “I don’t mind what gender the baby is as long as it’s healthy”, I said it myself, but I don’t think much thought is given to what if the baby isn’t healthy. And not just that, but how it will impact the rest of your life, as well as the baby’s.
Without the support of Jessie May … well, I just don’t know … it’s difficult to put into words … until you’ve needed and had the support of Jessie May, you would never understand how much that means and what a difference it makes.”
Support like yours means that Jessie May can be there for Becky and Hayley to help them navigate life with Ariana and Noah, making sure they have full lives together, as families and as friends.