Parents of boy with rare disorder fear over long-term impact of health crisis

Parents of boy with rare disorder fear over long-term impact of health crisis

The parents of a seven-year-old boy who suffers from a very rare metabolic disorder fear his condition will deteriorate significantly due to the effects of the coronavirus pandemic.

Dylan Finglas was diagnosed with Multiple Sulfatase Deficiency (MSD) just days after his second birthday.

The disorder, in which all of the known sulfatases (enzymes) are deficient or not working, means Dylan is not able to walk or talk, his eyesight is poor, he has neurological problems and he is fed via peg tube.

Without something to stop deterioration, most children will not live to see their 10th birthday.

He requires around-the-clock care and there is no treatment for the rare disease.

His parents Alan and Michelle Finglas are worried that Dylan’s issues will be compounded by the closure of facilities and cancelled appointments.

Mr and Mrs Finglas, who are also parents to two-year-old Jack, say that virtual appointments cannot continue long-term.

The Dublin family say they are now ‘hyper-vigilant’ to Dylan’s wellbeing and ensuring his medical supplies do not run out.

While Dylan enjoys listening to music, one of his most beneficial activities is hydrotherapy.

However, with Covid-19 restrictions it has been impossible for the family to access hydrotherapy facilities.

“It’s probably the best form of therapy he could get but it’s just not possible now,” Mr Finglas added.

“I would love the opportunity for that to resume at some point. Physiotherapy can really help keep people out of hospital and surgery, so it’s so important now more than ever to keep things moving.

I think a big concern now is that some appointments and community care has stopped, and if there is a surge in Covid-19 again, where does that leave things?

“While virtual appointments are OK in the short term, the longer we leave it the problems are going to build, and we do need these personal appointments.

“We will need a dental appointment for Dylan quite soon and will probably need a neurology appointment for his medications to be evaluated but we can’t do all of that remotely.”

Dylan uses nebulisers twice a day to help break up the mucus in his chest, as well as taking six different medications throughout the day.

“Even with his complex needs he’s quite happy and smiling most days,” Mr Finglas added.

“We are now having to be hyper-vigilant to everything. We noticed one of his medications was in short supply so we reported it the Health Products Regulatory Authority (HPRA) – we have to really look ahead and make sure we don’t run out of things.

“This does create some anxiety and adds a lot of stress.”

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