Struggling parents’ heartbreak after baby diagnosed with ‘life-limiting’ disease

The parents of a six-month-old baby girl have spoken of their heartbreak after she was diagnosed with a potentially life-limiting condition.

Doctors discovered little Sienna Gibson was suffering from Type 1 Spinal Muscular Atrophy (SMA) on Thursday May 12.

Now, mum Sian Kennedy and dad Jack Gibson are determined to raise awareness of SMA and access treatment to give their baby daughter a ‘healthier, ultimately happier life’

The couple have also launched a Go Fund Me Page, with the pair currently unable to work and living out of hotels as their youngster receives life-saving care in hospital, Teesside Live reports.

Jack explained how concerns about Sienna’s condition were raised to doctors, but was told there were no apparent problems.

The 24-year-old said: “We were told she just had a cough or she would develop in her own time, but we kept persisting as we wanted to know what was wrong with Sienna. We ended up going to a private GP who told us she had low muscle tone and severe reflux as well as being ‘tongue tied’.

“My sister has type three SMA so myself and Sian went for blood tests to see if we were carriers of the condition, it was a one in 800 chance that Sienna would have the condition.”

Sienna and her mum Sian.

It wasn’t until his niece’s speech and language therapist assessed Sienna that they began to get the answers they were looking for.

Jack added: “The speech and language therapist booked us straight into James Cook after taking a look at Sienna, she went through multiple tests and X Rays to get to the bottom of her symptoms – the staff have been absolutely amazing with her.”

Last Thursday, the family received the heart-breaking news that little Sienna did have Spinal Muscular Atrophy, with her type one form being the most severe strain of the condition. Without treatment, Sienna may not see her second birthday.

Still coming to terms with their daughter’s diagnosis, Jack and Sian have since been searching for answers on how their daughter can receive treatment.

Sienna will be taken to Newcastle’s RVI to see SMA specialists for assessments, and will spend a month in a hospital in Sheffield undergoing gene therapy.

The couple have decided to launch a Go Fund Me Page to help them with costs, as both are unable to work whilst they travel to hospitals for Sienna’s treatment and care for their baby daughter full time.

Jack said: “We decided to set up the page as we’ll be living out of hotels and travelling to and from hospitals whilst Sienna undergoes treatment and tests, with my Statutory Sick Pay (SSP) being £96 a week it won’t even touch the sides of all the extra expenses we now have.

Sienna with her dad Jack.
Sienna with her dad Jack.

“We could be going to hospitals for years ahead, but for now it’ll be two months. One injection of the treatment causes the NHS over £1million, luckily the government do cover some of the costs but the money raised in the Go Fund Me Page will also go towards that.”

Jack continued: “Sienna had her bloods done on Tuesday which have now been send to Holland.

“These tests will determine if Sienna’s body will react to the gene therapy that would extend her life. If the treatment works, she will be able to have a healthier and ultimately happier life.”

Jack, Sian and Sienna have recently got in touch with SMA UK – a charity which helps families affected by Spinal Muscular Atrophy, who are pointing them in the right direction of all the help and advice they may possibly need.

To donate to the family, visit their Go Fund Me Page here .

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