Summer's Story

Summer's Story The Story of Summer's life and adventures as a child living with Spina-Bifida and Hydrocephalus ❤️ Thank you for reading. This is Summer's Story

This is the story of our daughter Summer

Summer was born on April 4th 2012.

21 weeks into pregnancy we were told the fetus had spinal and brain abnormalities. This was diagnosed as Spina Bifida which at the time was just a term we knew nothing about. We had lots of tests and scans and were told by our Neurosurgeon that it is very likely she will never walk and that they were concerned about the amount of fluid on her brain which would need to be operated on the day she is born to reduce the risk of brain damage. Summer was born at 11am on the 4 April 2012 weighing 6lb 10oz by elective caesarean at Kings College Hospital. We got shown our baby and she was whisked straight off to surgery just minutes old. She had a hole in her spine and all her nerves were exposed in a sac of fluid outside of the body. Her nerves had pulled on the back of her brain which was causing too much fluid to be produced on her brain. In her surgery the hole was closed up and plastic surgeons closed the skin. She had a Ventriculoperitoneal (VP) Shunt inserted behind her right ear with a tube to drain the fluid on her brain down into her abdomen where the body would absorb it naturally. At 9pm that night we got to see our daughter properly for the 1st time in intensive care full of tubes and wires. She spent 2 nights in Intensive care and 12 days in the Special Care Baby Unit. She recovered brilliantly from her surgeries and we were allowed to take her home. Since then Summer's shunt has blocked on 3 different occasions at 7 months old 11 months old and 15 months old when she was fitted with a different programmable Shunt to control the amount of fluid that is drained. Summer takes all this in her stride and deals with every problem she comes across. She has progressed very well and is very advanced mentally and surprises every doctor we see with her understanding of the world around her and her drive to succeed in all she does! She has an amazing circle of support with her Mum n Dad, her 3 Brothers, Nanny, Grandad's, Aunties, Cousins, and some amazing friends.

31/10/2025

I won the Halloween Fancy Dress Competition Halloween Celebrations!




31/10/2025

Picking out our pumpkins




26/08/2025

Let's Explore

Amazing Scarlett AVM warrior !
20/08/2025

Amazing Scarlett AVM warrior !

On May 31st, 2024, our 9 year old tumbler Scarlett’s life changed forever. During a tumble gymnastics session, she suffered a sudden stroke caused by an AVM (arteriovenous malformation) — a rare and serious condition. Since that day, Scarlett and her family have faced unimaginable challenges.
She has undergone multiple life-saving surgeries, skin grafts, and ongoing medical consultations. Much of the past 14 months have been spent in and out of the hospital, with recovery continuing every day.

Scarlett is a fighter, and her strength has inspired everyone around her: we would be so grateful if you could support Scarlett’s recovery by donating or sharing her story.

This is the fundraiser link to raise money for Scarlett and her family, as well as the Ronald McDonald House. (70+ mile hike from South London to the South Coast, over 4 days this October).

https://gofund.me/e3dbea47

This is Scarlett’s personal fundraiser:
https://gofund.me/e22f3206

Her instagram journey : ______ tag her account

We are incredibly proud of you Scarlett♥️

Bendrigg Residential Trip 2025 - The Adventure Begins!I had the best time at Bendrigg Trust with my friends from Strongb...
18/08/2025

Bendrigg Residential Trip 2025 - The Adventure Begins!

I had the best time at Bendrigg Trust with my friends from Strongbones Children's Charitable Trust!
Activities Completed
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Pushing Myself Beyond Expectations! ✅

23/07/2025

That's a wrap on another school year! 🎓 We traded our homework for a technicolor explosion of fun to celebrate all the hard work, friendships, and memories made.
There’s no better way to kick off the summer holidays than with laughter, sunshine, and a whole lot of color. Here's to a vibrant and happy break! ☀️🎨

What's your favorite memory from this school year? Let us know in the comments!

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