Tilly’s PRS Journey

Our darling niece Tilly was born with a condition called Pierre Robin Sequence (PRS), which is a rare congenital birth defect characterised by an underdeveloped jaw, backward displacement of the tongue, upper airway obstruction and cleft palate. While Tilly is generally thriving she has had breathing difficulties and issues feeding, and is now learning how to swallow safely. She is currently fed via a NG feeding tube through her nostril.

Perhaps unsurprisingly, our beloved NHS is struggling to keep up with demand. The South West Cleft Team is unable to perform Tilly’s cleft palate repair operation before the recommended 13 month age, to avoid longer term speech delay. Desperate to give Tilly the best fighting chance of a good recovery, whereby they want to minimise inevitable speech delay, hearing loss and to aid her feeding orally, her parents, Orla and Lloyd, are having to go private for her operation.

Tilly also faces the challenge of how to progress with her feeding. Ideally she would be weaning like a typical baby and not relying on her feeding tube by now but, despite the incredible care from the NHS specialists, the lack of support means Tilly is far from ready for this. She’s waiting to have a stomach peg fitted (another operation) but again the NHS waiting lists are very long and it’s impacting when to have her cleft op, and subsequently her development. Orla and Lloyd are exploring going private for this also, to speed things up.

With medical fees and logistical costs going to reach at least £20,000, Orla and Lloyd are desperate to do right by their daughter by giving her every opportunity to have the best recovery, and as ‘normal’ a life as possible.

Any donation towards her treatment would be overwhelmingly appreciated.

We will be eternally grateful to all the staff at St Michaels NICU, Bristol Children’s Hospital, Musgrove Park Hospital, Great Ormond Street Hospital, the Community and Enteral Feeding teams, family, friends and neighbours who have shown astounding support. The CLAPA charity have also played a substantial role in supporting the Irish family.