HCU Heroes – Update on Xander and Max

Posted on by therarerunner

I’m thrilled to share that Xander and Max from Barnsley, South Yorkshire, UK are back as part of the team of HCU Heroes for the 2019 Miami Marathon!  When I first shared their story, the Tattersall family was just beginning their HCU journey.  My how much has changed in the last few years!

In the UK, where the Tattersall’s live, they didn’t screen for Homocystinuria at birth until recently.  As a result,  Xander (age 12 ) and Max (age 9) weren’t diagnosed with HCU until August 9, 2013 after Max was in epileptic status.  His neurologist just happened to check the right box on a series of blood tests which lead to their diagnosis.
Both boys had experienced learning and behavioral difficulties for a few years prior to diagnosis.  They were both discovered to be B6 non-responsive.
Upon diagnosis, the boys started treatment with a low-protein diet as well as formula containing amino acid supplements.
One unusual side-effect of the treatment is that the boys’ hair changed from blond to dark brown, as HCU affects pigmentation.

Here’s Xander before treatment:


And here’s a photo of the boys after starting treatment (Xander on the left):

Fast forward to 2019, HCU is now listed on the newborn screening tests in the UK!

Xander and Max’s Mom, Sophia, reports that the boys are going from strength to strength, but Max has given them a few grey hairs along the way.  He has had 3 very serious stays at Sheffield Childrens Hospital due to complications, one of which was a perforated gall bladder.  Max is now on a new epilepsy medication as the complications were most likely caused by the previous epilepsy medication.  He’s doing amazingly well.

Xander just had his first eye surgery, removing his detached lens in his right eye.  He is recovering well and now awaiting surgery on the left eye.

If you’d like to make a donation to HCU Network America in honor of Xander & Max, or another HCU Hero, please stop by my fundraising page for the 2019 Miami Half Marathon:

Krstin’s Fundraising Page for HCU Network America