Following a pregnancy scan, Ellis’ parents were told to expect that their baby would have talipes (club foot). Although they were concerned, Francine and Ryan were reassured to learn that there were no signs that their baby had any other health issues. But, when he was born it was obvious that their son had far more health complications than anyone had expected.

‘When Ellis was born, we saw straight away that his hands weren’t fully formed, that he had a cleft palate, and that he wasn’t able to blink. As time went on, we started to see other complications too,’ explains Francine and Ryan.

At five weeks old, Ellis was diagnosed with Moebius Syndrome, a rare congenital (present at birth) condition that results from underdevelopment of the facial nerves that control some of the eye movements and facial expressions. The condition can also affect a child’s speech and their ability to chew and
swallow.

It was a very worrying time for Ellis’ Mum and Dad. After more tests and appointments, the doctors told his family that Ellis would struggle to communicate verbally and that problems with chewing and swallowing meant that he would need to be fed via a tube in his stomach. Further complications were identified with Ellis’ eyesight and his hearing.

Having a baby with profound and complex needs meant that family life changed quickly – making sure that Ellis’ care needs were taken care of around the clock.

‘Because Ellis is non-verbal, we have to keep a really close eye on him. If he’s uncomfortable or in pain, he can’t tell us what’s wrong with him, and we have to keep a close eye on things like his feeding tubes and other equipment.’

Being a parent of a baby is incredibly demanding but when you add in the additional caring needs that Ellis has it is both physically and mentally  exhausting. As well as caring for Ellis, Francine and Ryan were also busy looking after their two daughters, Sadie and Rosie, who are just a few years older than their little brother.

Ellis was five months old, when his nurse suggested to Francine and Ryan that Zoë’s Place could support them. And over the past couple of years, Ellis, his sisters and parents have become part of the Zoë’s Place family.

‘Ellis stays at Zoë’s Place for a couple of nights each month. At first it was tough because we didn’t know what to expect, but we quickly realised that the whole team really understand his needs and know exactly how to look after him. We also saw really quickly that the nurses really care, and they love him!’

During Ellis’ stays at Zoë’s Place, he gets to enjoy a special programme of activities and therapies tailored specifically to his needs. Ellis particularly enjoys messy play and the hydrotherapy pool.

‘When Ellis is at Zoë’s Place, we spend quality time with the girls, doing things they like such as going bowling. We also get the chance to rest and recharge our batteries. By helping the kids, Zoë’s Place really helps the whole family – it’s a godsend for us,’ explains Ryan.

At Zoë’s Place our nurses, play therapists and counsellors work hard to support the entire family.

‘We know how much siblings are affected by having a brother or sister who have complex needs and we have special family days and outings for siblings. Having a child with life-threatening or life limiting illness or complex needs, is immensely stressful and we’ve recently added counselling and holistic therapies to support the wellbeing of our parents,’ explains Michelle Livingstone, Director of Care at Zoë’s Place.

All of the care and support we offer to Ellis and his family is only possible because of our supporters. Your support means that we can keep supporting other local families who unexpectedly find that their family life has changed and they need us.

Thank you.