PARENTS whose two-year-old daughter was given life-changing hospice care after being diagnosed with a nervous system disorder have helped to raise more than £70,000.

Pete and Michelle Hughes, who live near Llandudno, wanted to repay Hope House Children’s Hospice in Conwy for the “phenomenal” support their four-week-old daughter Matilda received while undergoing tests and operations in the midst of lockdown.

Matilda’s Summer Appeal has so far gathered £70,125 for the hospice to deliver crisis, respite and end-of-life care for babies, children, young people who have life-threatening conditions and are not expected to live beyond 25 years old.

“We are overwhelmed by the generosity from everyone who has donated to Matilda’s Appeal, especially during these hard times,” said Michelle.

“Every penny goes to help such an amazing charity, we are fortunate to have Ty Gobaith in our lives and the support they provide us and our Matilda is phenomenal.

“By sharing our story we have received a lot of support and love from everyone and our main aim is to highlight the fantastic work Ty Gobaith does and how they make a difference to the lives of children like Matilda who go there.”

After a series of hospital tests including lumbar puncture, CT and MRI scans as well as an EEG to monitor her brain activity, Matilda was diagnosed as experiencing clusters of seizures due to a neuronal migration disorder.

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.

“Coming [to Hope House] 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.”

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

For more information and to donate visit the Hope House website.