Phoenix's Journey

Hello, my name is Lucy and I am a mum of 5 children.

On the 2nd of June 2023, I went into spontaneous labour 9 weeks early, I lost 3 litres of blood and Phoenix's heart had stopped, both Phoenix and I nearly lost our lives.

Little did I know, this was the start of our fight for life. Phoenix couldn't breathe independantly, he couldn't eat or cry. 6 months later, Phoenix was diagnosed with what felt like a life sentence for him. He was diagnosed with terminal 4Q deletion syndrome. A condition that affects every organ inside his tiny little body, his muscles, his height, his weight, his milestones and his communication.

We have spent a total of 11 months in hospital, praying that he'd make it out everytime. We were told something as small as a cold could kill him and that his condition lowers his life expectancy to 2 years old. We have many different equipments for him from a CPAP machine, sats monitor to several chairs and adaptions. Phoenix gets sick so quickly and always takes it out of him, we have been informed on 4 different occaisions that Phoenix would not make it home from either a cold or the norovirus. Something you and I fight daily, could kill Phoenix. We currently have weekly appointments for him with his medical team and he puts so much effort into it every single time.

Phoenix has defied the odds, he is the strongest and most hard working little boy I have ever met. He is kind, happy, precious and most definitely the light of our lives, especially for his brothers and sisters.

With Phoenix's 2nd birthday this year, the most important one to us, we wanted to make it memorable, something we could never forget. A memory we will hold forever. I am raising the money to be able to take my 5 children to Disneyland Paris, to be able to have the medical insurance to cover us for the time we are there, the accommodation, the tickets and to give him a holiday he will never forget.

I was reluctant to set up a go fund me page as we wanted to get there on our own but with the rollercoaster of Phoenix's journey, we are afraid we just won't make it without your help. Please do not feel obligated to donate, just a simple share is appreciated enough.

If you would like to hear more about Phoenix's story, copy and paste the link below: https://www.mirror.co.uk/news/uk-news/my-son-diagnosed-rare-condition-33808996

Thank you to everyone donating, sharing or just word of mouth.

Love from the Gill-Perry’s x