Sharing our stories - Paige’s story

Paige was born in April 2013, happy, healthy and beautiful. We enjoyed every minute of life with 2 girls, making family memories and celebrating each milestone. But Our lives unfortunately changed forever when Paige suffered her first prolonged seizure, just 7 months old. We watched for hours as Nurses, Doctors and Surgeons fought to save our baby girls life. This became a regular event over the next 6 months we would continue to watch our baby fight with all her strength on an almost weekly basis. Doctors would drill holes into her shins to administer life saving medication and we would watch crash teams resuscitate her. Paiges airway would regularly collapse they would transfer her to the intensive care unit. All we could do was hope and wait. Our life was falling apart and we were terrified of losing Paige. In may 2014 after various tests MRI’s and lumbar puncture we were given the devastating news that Paige had a rare and catastrophic epilepsy called Dravet Syndrome.

 

Dravet is a rare and drug resistant condition there is currently no cure and it affects every aspect of our lives. Paige suffers several seizure types,her balance is poor and she is losing the ability to chew and swallow her food, She has global development delay and Autism. I have also had to train in advanced airway support and have resuscitated her hundreds of times in her short little life. We carry medical equipment and oxygen wherever we go and Dravet is always at the front of our mind. 

 

Paige continues to have seizures, she is medicated twice a day and is fitted with a VNS which sends electrical signals to the brain to potentially stop seizures before they start.  She is very loved and receives so much support from family, friends, school and the Children’s Hospice. She is at risk of SUDEP (sudden unexpected death in epilepsy) and sleeps attached to machines at night to monitor her heart rate and oxygen levels.

 

I will never get over the trauma of having a child with such complex medical needs but we live for each day and never take a moment for granted. throughout our journey even at times when I just couldn’t take anymore I found the strength to get through and it’s all because of Paige. She continues to amaze us everyday, she is incredibly strong, resilient and full of life she has overcome so many hurdles. She is the bravest little girl I know. 

 


Older Post Newer Post


  • Donna on

    I went to secondary school with paiges mum and to see any family going through this especially when you know them is devastating. They are an amazing family and have so much support. Xxx

  • Babs Keyes on

    What a truly amazing girl and family xx

  • Claire on

    Wow how amazingly brave is Paige, and her whole family x must be very difficult for you all x


Leave a comment