This is the story of our son, Jude Drinkwater.

Jude was born on 25th February 2018. From day one we knew Jude was going to be a fighter. He struggled feeding, had low muscle tone and, every now and again, jerky limb movements. As he got older, we saw delays with development of speech, mobility issues such as problems rolling, sitting, crawling and walking, and lack of interest in toys. Despite all of this he was the happiest, strongest and most resilient little boy.

We were in and out of hospital most of his life but with every scan, blood test, injection, operation or intubation, he took it like a trooper and it became our "normal".

On Saturday 2nd November we were admitted to Manchester Children's Hospital. This was Jude's 3rd visit to intensive care in 7 months.

Every test that Jude had had in his short life to try and determine what was causing his differences had come back clear - brain scans, muscle biopsy, blood tests, hormone test. On 28th November 2019 this changed... an MRI scan showed his brain had shrunk. Jude's undiagnosed neurological condition was now a degenerative condition, meaning this was only going to get worse, with the outcome being every parent's worst nightmare.

Not knowing what was causing this to happen was torture, but thanks to the incredible work of genetics teams across the UK, on 20th December 2019 we were told they had found something and we finally had an answer.

Jude had a very rare condition called RETT SYNDROME.

This usually only affects girls. There are very few cases of it affecting boys - where a male child may have it, the child is usually miscarried. The fact that Jude had been with us at all had defied all odds and expectations and we were so thankful that we'd had this time with him. We found both comfort and relief in finally knowing what it was that Jude had been living with. He was a fighter from the beginning until the very end.

He peacefully passed away on 1st January 2020.

Although this story doesn't have a happy ending for our precious baby boy, we want to do everything we can to help others. He was beautiful and so loved by everybody who met him. We are determined to share his story and make sure that we only have happy thoughts and memories. We are so proud of how far he came and how he fought against Rett. Now it's our turn to carry on the fight and raise awareness.

*EDITED* This page has been set up in order to help raise money for 3 charities:

•Ronald McDonald House Manchester

•Rett UK

•Reverse Rett

Any donations we receive will be divided between these three great charities to help children and families who may have to go through a similar situation.

The wonderful staff and the location of Ronald McDonald House made living away from home for 2 months slightly easier. It allowed us to stay together as a family over Christmas.

After receiving the diagnosis of Rett Syndrome, raising awareness about it in boys especially is something we feel strongly about. There are 1000's of children in the UK alone with undiagnosed neurological conditions and many may die before being given a diagnosis. Rett is so unbelievably rare in boys but Jude has shown that they can indeed get it. If we can help just one family in receiving a diagnosis then we will have done Jude proud.

Reverse Rett is the only UK charity funding research focused on treatments and a cure for Rett Syndrome.

Thank you for reading and thank you for your donations.

Claire, Phil and Mathilde x