Scots parents’ heartache as baby with rare genetic condition will not live long enough to go to school – Daily Record

Posted By on June 14, 2020

His bright, blue eyes shine with happiness but behind his smile lies heartache for little Rowan Packers parents.

For the one-year-old tot will not survive long enough to even go to school.

Little Rowan has a rare condition called Tay-Sachs Disease, a genetic condition which causes progressive damage to the nervous system.

It affects just one in 320,000 babies although it is more common within the Ashkenazi Jewish population of Eastern Europe where one in 3500 babies are born with it.

The family do not think there are Ashkenazi antecedents on either side and Rowans brother and sister Aaron, seven, and Gracie, five, do not have the condition.

Mum Deborah McDonald, 26, and delivery driver dad Aaron Packer, 25, had never even heard of the condition before Rowan was diagnosed.

Deborah, who trained as a nurse for a time, said: Id heard about other genetic conditions but never this one. It was an absolute shock.

Student Deborah, studying for an honours degree in integrated health and social care, had a normal pregnancy with Rowan. With her other two pregnancies she suffered life-threatening pre-eclampsia and they were born nine weeks early.

But Rowan wasnt born until 39 weeks.

However, Deborah, who has the immune disease lupus which can cause damage to organs and as well as causing miscarriages, had always felt there was something very different about the pregnancy because Rowan hardly moved.

But she said: He looked absolutely perfect when he was born and all the routine tests came back fine.

He weighed 5lb 15oz the biggest of all the couples babies, with Aaron only 3lb 3oz and Gracie a tiny 2lb 14oz.

She said: He was maybe about four months when we realised he wasnt trying to turn over. We were doing exercises on the mat with him but he didnt have the urge to do it.

His eyesight was always a bit strange. He never focused on a person or an object.

Rowan wasnt progressing like a normal child at all.

He had a string of tests but when a cherry dot was spotted on the retina during eyetest it pretty much confirmed the diagnosis.

Deborah said: It is just mad. This thing can be in families for years and years but the chances of meeting a partner who also has the gene are quite slim, particularly in somewhere the size of Scotland.

We only know of one other child in Scotland with it, a little boy in Aberdeen, and his mum has been helping me with answers and advice. He is maybe three or four and is unresponsive.

It is hard knowing no matter what you do, Rowan will not survive. If it was cancer there may have been a chance but there is nothing that can be done for him.

Rowan, who turned one on May 24, can only eat pureed food and his movement is just like a newborn.

Deborah said: He can smile and laugh. But that will go. He will never be able to sit unaided or roll over and he cant put any pressure on his feet.

If he is not lying down, he is in his chair if we are not lifting him. His wee muscles just dont work and anything that he can do just now will be lost. Even any automatic responses will go away.

At the end, he will be completely unaware of anything. The body just stops functioning.

The couple are desperate to move to a bigger home. At the moment they are in a two-bed private let in Mosspark, Glasgow, as they wait for a Glasgow Housing Association medical property to become available.

The family need a bigger house so Rowan can have a proper hospital bed and a hoist for when he grows too big for his mum to carry.

Deborah said: We have been bidding for medical properties but we have lost out to people who have been on the list longer.

GHA said they are doing all they can to help the Packers find a home that suits their needs.

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Scots parents' heartache as baby with rare genetic condition will not live long enough to go to school - Daily Record

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