PARENTS have shared their two-year-old daughter’s heart-wrenching story of hospital tests and operations after she was diagnosed with a nervous system disorder – and discovering timely help at a Conwy hospice during lockdown.

Pete and Michelle Hughes, from Penrhyn Bay, were overjoyed when they discovered that they were having baby Matilda after their first round of IVF treatment in spring 2019, but within weeks their precious daughter seemed jittery and jumpy and would wake suddenly in the night with her legs reaching skyward.

“I instantly called my mum for advice and she came straight over,” said Michelle. “Mum saw her and said we needed to call an ambulance. We were taken to A&E where Matilda had more ‘episodes’. Things moved quite quickly after that.”

Matilda underwent a series of tests while in hospital including a lumbar puncture, CT and MRI scans and an EEG to monitor her brain activity. When she was just four weeks old Michelle and Pete were given the devastating diagnosis that Matilda was experiencing clusters of seizures due to a neuronal migration disorder.

They soon found themselves on a roller coaster of hospital tests and operations that they could not have dreamt of.

Pete said: “We were just raw. We had just found out that our daughter would have learning difficulties and seizures and might never walk or talk. They had given us the worst-case scenario.

“It was like a roller coaster. You want the best for your daughter. We tried to remain strong and just prayed that they might have got it wrong.”

Matilda returned to hospital for an operation on her brain that stopped the longest seizures, however she still suffers from clusters of smaller seizures. An infection meant that Matilda spent three months in hospital recovering. It was then that the coronavirus began to spread across the world, and the UK went into lockdown two days after Matilda returned home.

“I felt safe in hospital because the professionals were there,” said Michelle. “When we came out of hospital into lockdown it was so difficult with no family members around to help.

“We have a close-knit circle of family and friends and not being able to see them was difficult.”

It was then that a community nurse told the couple about Tŷ Gobaith, and they turned there for help.

The Conwy hospice has kept all of its services running over the past year, providing crisis and end of life care, respite care and counselling for seriously ill children and their families.

“Coming here for the first time in the middle of a pandemic was strange, but straight away it felt safe and everyone made us feel so welcome,” said Pete. “We came back with Matilda to stay and the nurses were amazing. They worked with Matilda and she has physiotherapy. Because of the pandemic we didn’t get to mix with other families but everyone put us at ease.”

Tŷ Gobaith has also been able to support the family with regular welfare calls and online physiotherapy by Zoom.

“The support from Tŷ Gobaith has been phenomenal and that is during a pandemic,” added Michelle. “At the moment just having Tŷ Gobaith here is incredible and we feel in control, and we know there are more services available. Matilda is very small now but she is complex and I can see that as she gets older it will be nice to have time away and for her to have that time with other people as well.

“We know that when she comes here she is happy and safe and that she gains so much."

Matilda’s family are so bowled over by the support she has received from Tŷ Gobaith that her Nanna Sue has already raised more than £1,000 making beautiful hanging decorations from conkers called ‘Matilda’s Hearts’. The family also took part in the hospice’s 10 mile Take a Hike sponsored walk, trekking around the Great Orme with Matilda and raising another £1,000.

Tŷ Gobaith fundraising director Simi Epstein said she hopes Peter and Michelle’s bravery in sharing their story would show people the importance of keeping services running at Tŷ Gobaith.

She said: “There is no doubt that the last 12 months have been a challenging and testing time for so many people, and we have found that children and families have needed our help and support more than ever.

“But it was, and still is, a struggle to cover our costs. With our shops closed for long periods and our charity events cancelled, we are more dependent than ever on people who believe in what we do and want to help. With their donations we can continue to be here to help children like Matilda.”

For more information and to donate visit Tŷ Gobaith.