Tuesday 18th July 2017

Jessica's Journey

We are honoured to share Jessica's remarkable story in support of our Schiehallion Appeal, which aims to bring more clinical trials to our children's hospital to care for young cancer and blood disorder patients.

Little Jessica McMillan’s life was saved by stem cells taken from the umbilical cord of a baby born four years ago. The extraordinary procedure has given Jessica who is now 22-months-old a future her parents feared she may never have.

When Jessica was born, she seemed like any other healthy baby. Her excited parents Kathleen and Sammy took her home to Galston, Ayrshire, and started settling into life as a family of four with their son, also Sammy.

Jessica failed her early hearing tests and developed a loud snore. But the family were reassured by her health visitor, who said she was likely suffering from congestion after her caesarean birth.

At 10 months old, following concerns about her hip and spine, she was referred to a paediatrician, who suspected she could be suffering from a form of MPS – a collection of genetic diseases that stop the body producing vital enzymes.

Just days before her first birthday, medics diagnosed her with MPS1, also known as Hurler syndrome. It’s a condition that on average affects just one baby in Scotland a year.

The family were given the devastating news that Jessica would die within a few years unless she got a successful bone marrow transplant.

Kathleen said: “It was made clear very quickly that Jessica would spend a lengthy time living in hospital. The transplant would come with risks and we were warned she may not survive the whole process – but we knew it was our only chance.”

Jessica started treatment, including chemotherapy and enzyme therapy, in the Schiehallion ward at the Royal Hospital for Children in Glasgow to prepare her for the transplant. The process made her very ill and caused her to lose her hair.

Kathleen, Sammy and her big brother, now five, had all been tested to see if they could be her donor but none of them were a match.

Then, in December, the family were told stem cells from a baby’s umbilical cord could be used.

The blood from the cord, which was donated anonymously four years earlier by a mum from outside the UK, was flown to Scotland for the procedure.

Kathleen said: “There’s a wee four-year-old child somewhere who has no idea what they have done for us.”

Jessica had her transplant but was very poorly over Christmas and was kept in strict isolation. After a few days her blood counts started to rise and her condition improved.

Jessica continued to get better steadily but needed blood transfusions whenever her platelet levels dropped. Kathleen was forced to give up work for a year and spent six days a week living at the hospital while Sammy, juggled work with travelling to the hospital and looking after their son.

Kathleen said: “Living in hospital makes you feel like your whole life is on hold. We missed out on many special occasions, like not spending Christmas Day together and just doing things any normal family take for granted.

“But we really tried to make sure life was as normal as possible for Sammy and, thanks to our family and friends, he has had lots of attention.”

After several weeks, Jessica’s blood counts improved drastically and medics found she was producing her own enzymes.

In February, doctors said she could leave hospital on a carefully structured home treatment plan.

Kathleen said: “Getting home was just amazing. But Jessica has already been back in Schiehallion three times since her original discharge from the transplant. Her low immune system means she can pick up bugs very easily.

“She has only been home for a few days between these hospital stays but she came home again at the end of last month and is still here, so our fingers are tightly crossed.”

The family hope the Schiehallion Appeal will fund advances to help children like Jessica in the future.

Kathleen said: “The more opportunities we can bring to this incredible hospital for these children the better. With everything our family had to go through, it helped immensely to be surrounded by amazing, friendly staff at Schiehallion, who not only cared for our beautiful girl but were there when we needed them, too.

“We don’t know what the future holds, how Jessica will progress and what sort of life she will have.  Jessica is never going to be fully healthy but she can be happy. For now it is about the gift of having our amazing, happy little girl in our life and treasuring every minute of it.”

To support our Schiehallion Appeal, please text CHILD to 70707 to donate £5, call 0141 212 8750 or  donate online here > 

0141 212 8750

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