The 19-year-old noticed her three-month-old daughter, Phoebe May, was squinting and unable to hold her head up back in September 2014.
Despite making numerous trips to Hull Royal Infirmary, the teen says she doctors told her “rudely and arrogantly” that her baby was fine
However, in May 2015, little Phoebe was diagnosed with the Sandhoff disease – an incurable condition that means she’s unlikely to live past the age of four.
Sandhoff disease causes the nervous system to shut down and symptoms include blindness, deafness, issues with breathing, muscle weakness and seizures.
Kaytee's mother Kerrie is furious with everything that has happened. “Since Phoebe was three months old, Kaytee has been crying out for help as she knew there was something wrong.
“Kaytee is a 19-year-old, single mum and we strongly believe this has impacted on how she and her daughter have been treated by the medical profession.”
The family is currently considering moving so Phoebe can get specialist treatment and access to a drug that can help her seizures, after being told this service is not available under the Hull and East Yorkshire Hospitals NHS Trust.
Speaking about her daughter’s illness, Kaytee says: “I just feel so angry... No one knows Phoebe better than me and I knew something wasn't right.
“I was constantly ignored and told she would develop in her own time, and some babies are slower than others. If she had been diagnosed earlier there may have been other treatment available to Phoebe, which may have been able to help her.
“I feel like I have had to fight every single day for Phoebe to get what she needs; instead I should be playing with Phoebe, making memories with her and making sure she is as comfortable and as happy as possible in the time we have.'
