Summer's cruel disease DIAGNOSED WITH DEMEN TIA AT 8!

The Cambridge school girl has a rare, incurable form of Batten disease, which causes blindness, childhood dementia and loss of mobility

- Cloe Willetts

Summer Mudford is an art- and animal-loving primary schooler, whose favourite thing is to pick up her microphone and start the morning singing her heart out. She also ends her days belting out music, dreaming of singing with her favourite popstar Pink. Music is medicine for the young Cambridge local, who sadly lost her eyesight at eight. 

In late 2021, Summer, now aged nine, was diagnosed with an extremely rare form of Batten disease, which aff ects the nervous system, causing worsening vision, movement and cognitive function. At home, her parents Vanessa, 43, and Ray, 41, compare it to the movie Benjamin Button, where the lead character ages backwards. Summer’s type of Batten’s, called CLN1, has little known about it and no cure. Devastatingly, it’s also fatal.

“When Ray and I found out we were having a girl at the ultrasound, he hugged and kissed the sonographer, saying, ‘Wait a minute. Have you ever got this wrong?’” laughs Vanessa, 43, who also has three sons in their twenties with high-school sweetheart Ray.

“We were so excited to have a daughter and we named her Summer because we knew she was going to be our little joy.”

Before Vanessa noticed Summer squinting her right eye while watching TV, she was a healthy book-loving kid who enjoyed doing Brazilian jujitsu and playing with friends.

"I asked if her eye was sore and she said no, but the following morning, I saw her right eye was looking completely to the side," Vanessa recalls. "We thought maybe it was lazy and she'd need glasses to correct it. Summer got glasses - they didn't work and her eye was getting worse, so the optometrist referred her to a specialist."