Help us get Rory the assessment he needs.

Hello, we are the Mullan family, and we need some help...

In 2019, our little boy Rory was diagnosed with the hereditary brain condition called Chiari Malformation and it has affected his health since birth.

Chiari Malformation causes -

pain and tingling in arms and legs

dizziness

feeling sick

balance problems

visual disturbances

problems swallowing

pressure headaches.

Rory had decompression brain surgery in December 2021 in the hope that having the surgery would help alleviate the symptoms. Rory made a good recovery for the first few weeks but, three weeks after, Rory became very poorly and ended up in Southampton Children's Hospital due to the build-up of pressure and fluid in his brain. Rory then developed meningitis earlier this year, which put him back in the hospital for a while. We are constantly in and out of the hospital with Rory; A year on, we still haven't got a happy, healthy child.

Since Rory had his surgery, he has become a different child. Rory's headaches have become debilitating; he is super sensitive to light, has nightmares, wets the bed, and has become highly aggressive.

Rory is one of four children, and his behavioural changes impact our other children significantly. Rory attacks his 8-year-old brother and five-year-old sister daily. As parents, we thought we were doing the best by Rory, making him have this operation, but his life has been tipped upside down alongside ours.

We have been told that it will be a 12-18 month wait for Rory to have an assessment to assess for Autism & ADHD. We are looking to fund a private assessment for him. Once Rory receives a diagnosis, it will open up support networks for his siblings. We are restricted to what help we can access until Rory is diagnosed. We are so desperate for help we have asked for Children's Services to help us with him, but again we are stuck until a diagnosis has been given - hence why a private assessment could help us out massively.

We are also looking to fund a therapy dog for Rory. We call him “Doctor Dolittle” due to his kind nature towards animals. We want to purchase him one and then put the puppy through intense autism training so that they can assist Rory in his daily life.

All we want is a happy, healthy little boy receiving the care he needs at home, school and in the community. A diagnosis won't change anything for us, but it will make things easier for our boy.