Parents Lose Two Babies Weeks Apart as Child Dies of Rare Genetic Disease

A father in the U.K. has vowed to keep his sons' legacies alive after his 17-month-old child died just weeks apart from his sibling.

Andy and Sarah Rooke, from Prenton in northwest England, have shared the heartbreaking details of their son Charlie's death. He died on February 25, 2020.

Charlie was diagnosed with spinal muscular atrophy respiratory depression (SMARD) in November 2019.

The inherited condition causes muscle weakness as well as respiratory failure that typically begins in infancy.

Andy Rooke told The Liverpool Echo he and Sarah Rooke had "suspicions" something was wrong after Charlie was born. They noticed he would suddenly stop breathing.

The 38-year-old told the Echo: "In May 2019, I got a phone call from Charlie's mum while I was in work to say he was choking and had been resuscitated in the Cherry Tree Centre by a passing nurse.

"When I got there, I went in the ambulance to get him to the hospital. So we went to Arrowe Park [hospital] and that was on May 1, 2019, we were in there for a few days and they checked him over and realized he had a paralyzed diaphragm on the right-hand side.

"They sent us home for one night and I thought he possibly aspirated on some vomit and was having pneumonia or a chest infection. So I took him in and as it was and basically he stayed in the hospital from there."

In November that year, the family was told that Charlie's condition was terminal. At the time Sarah Rooke, 35, was pregnant with Charlie's brother, Thomas.

Thomas was stillborn the same month after an amniocentesis was performed to check for genetic disorders and ruptured Sarah Rooke's waters.

In February 2020, Charlie lost his battle to the genetic disorder, having lived beyond his life expectancy of 13 months.

Andy Rooke told the Echo Charlie was a "really happy little boy" and "alert, very switched on and he used to babble a lot and shout."

Hoping to raise funds for children's hospice Claire House, Andy Rooke has undertaken a challenge to build a snowman on top of the highest mountains in England, Scotland and Wales.

The challenge is inspired by Charlie's love of The Snowman, an iconic winter-themed children's animation.

Andy Rooke, who is a member of a mountain rescue team, assured people he was used to the conditions and said he would remove the items of clothing and decorative items from each snowman before he leaves each mountain.

In a JustGiving fundraiser page, Andy praised Claire House and added: "Sarah and I would like to say a huge thank you to Claire House Children's Hospice and all the staff for helping us for many months and helped him pass away peacefully at the Hospice.

"They continued to care for us after he passed away and allowed us to stay with Charlie to cuddle him, read stories and help us with the grieving process."

As of Sunday morning, the JustGiving appeal had raised £13,616 ($18,433) out of a target of £25,000.

Mark Pearson, who works at Claire House, told the Echo: "We are very grateful to Andy for all the hard work he is putting into raising vital funds for Claire House.

"The money he raises will help us reach out to more families like the Rookes who desperately need support."

Newsweek has contacted Claire House for comment.

Stock image of two people holding hands
Stock image of two people holding hands. Charlie died of a rare genetic disorder. fizkes/Getty

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