Young boy with undiagnosed genetic condition defies odds and ‘everybody’s expectations’ to start walking

A three-year-old boy with an undiagnosed genetic condition has defied the odds and started walking.

Little Charlie Phillips, who is partly tube fed and cannot speak, needs oxygen to help him breathe at night and has difficulties coordinating and controlling his movements.

He has undergone various invasive tests since he was born and is part of the 100,000 genomes project at Southampton Hospital, which means doctors are continually analysing his DNA to try and find out more about his condition.

But despite not having a diagnosis, Charlie has ‘exceeded everybody’s expectations’ and is managing to hold up his head and recently started walking slowly, much to the delight of his family – mum Katie, brother Jacob, nine, and twin brother Louis.

‘He has exceeded everybody’s expectations and gone from strength to strength and he has the most infectious smile,’ proud mum Katie said.

‘There is no diagnosis, so no prognosis, so it is difficult to plan things. I still don’t know what the future holds for Charlie but this time last year I would not have said he would be walking.’

Great-Rainbow-Bake

Katie praised the work of the Rainbow Trust Children’s Charity, crediting them for supporting her and her family through Charlie’s difficult journey.

‘Just having someone else to turn to, talk to and to help with all the little things makes a huge difference to my family,’ Katie said.

Rainbow Trust enables families who have a child with a life threatening illness to make the most of their time together by pairing each family with an expert Family Support Worker who helps them at home, in hospital and in the community, for as long as it is needed.

Now Katie and her three boys are fronting a new campaign by the charity, calling on people to take part in the Great Rainbow Bake on May 7th.

The campaign invites people to have fun by baking – not just a rainbow cake but any cake – with family, friends or colleagues and making a donation to the charity while raising vital awareness and funds to help support families caring for a seriously ill child.

Great Rainbow Bake

‘I would encourage people to take part in the Great Rainbow Bake and help families like ours because Rainbow Trust has been like a lifeline,’ Katie said.

‘It is so important to raise awareness of Rainbow Trust because I wouldn’t have wanted to be without them. Having [family support workers] Dawn and Amanda made life a lot easier and made me a lot less anxious.

‘They were there when I needed to talk or needed someone to listen to and they totally understood.’

You can find out more about the Rainbow Trust and the Great Rainbow Bake and watch an animation about the campaign here.

Participants are also being encouraged to share their Great Rainbow Bake pictures on social media using the hashtag #GreatRainbowBake