Hull family search for answers on 4 year old daughter's life threatening condition
Ivy Shirley Allen was born with chromosome 70 deletion
Last updated 16th Feb 2023
The family of a four year old girl in Hull, who's suffering with a life threatening condition, are urgently searching for answers on the best way to treat her.
They fear every time they see her it could be their last.
Ivy Shirley Allen was born with chromosome 70 deletion - her parents Danny and Betsy were told it's never been medically recorded before.
We don't know how long we have with her
She also has another condition which has resulted in her being fed through a tube.
Ivy's currently being treated at Hull Royal Infirmary - her dad Danny says they're now wanting to get a second opinion.
"We don't know how long with have with her."
"The NHS waiting lists are just not applicable for us as a family."
"We're trying to branch out to get awareness for Ivy and for her condition and hopefully someone will help us with that."
It's thought she's the only person in the world with her condition
"Ivy's fed through a tube, she has stomach failure so we've had to go into the lower part of her body."
"With it being so fragile and Ivy's condition on top it's proving very difficult to keep feeding at the rate she needs."
"She's the only person in the world with that condition."
"Fight for Ivy - we've set it up to try and get a second opinion on Ivy due to her complexities."
"The majority of it will go towards the treatment of Ivy and the goal is to try and get to Great Ormond Street hospital to try and get an overhaul of her."
This is the link to their Just Giving page:
https://www.justgiving.com/crowdfunding/betsy-allen
A spokesperson for Hull University Teaching Hospitals NHS Trust says:
"We acknowledge the health conditions and challenges faced by Ivy and her family.
Appropriate medical pathways of care are being followed within the NHS."