A mum inspired by the tragic death of her one-year-old baby will be joining hundreds lining up for this weekend’s Northampton Rainbows Colour Run.
Mel Kerr’s daughter, Jessica, was born with Patau Syndrome. Some of its characteristics include heart defects, cleft palate and scalp defects, and between 80 per cent and 90 per cent of babies do not survive infancy
Mel said: “When Jess was two-days-old they said she had Patau Syndrome and my world fell apart. I was crushed. I was devastated. Absolutely devastated. “The family were warned that Jessica would not reach her first birthday and even for her to make it to four weeks old would be difficult.
Unable to gain weight, Jessica was fed through a nasal tube. She also had no immune system and was prone to picking up infections, which she’d struggle to fight off.
Her condition meant Jessica would often forget to breathe and turn blue. When this happened her parents, Mel and Simon, would give her oxygen and stimulate her chest. She would also regularly be unresponsive and needed respiratory resuscitation. Sometimes Jessica would have to be resuscitated a number of times throughout the day.
Mel said: “We had to make plans in case she deteriorated. We were nervous wrecks. The first four weeks were hell and we were just waiting for her to go. I couldn’t take my eyes off her for a second. I couldn’t even go to the toilet without her in case she stopped breathing. It was horrible. We had to take it in turns to sleep but we didn’t really sleep at all.”
Despite all of this, Jessica beat the odds and celebrated her first birthday with her family. “It was amazing,” Mel said. “After what the doctors told us when she was born, we never thought we’d get to spend so much time with her. She deserved to celebrate her birthday, she was such a happy, smiley baby despite everything. We really will cherish the time we had with her forever.”
Sadly, Jessica passed away on April 26, 2014 at the age of one year and two months. But Mel is determined to make sure her legacy lives on.
Throughout her short life, Jessica and the Kerr family received care, support and guidance from Rainbows Hospice for Children and Young People. The hospice is the only one of its kind in the East Midlands and provides vital help for children and young people from across the East Midlands with life limiting conditions, as well as their families and siblings. The organisation currently cares for over 300 children and over 500 families, including many in Northampton.
Mel said: “I love Rainbows. It was a huge part of Jessica’s life. At first, I didn’t want her to go to Rainbows as I thought it would be a sad place where people go to die. But after I looked round and met the people, I fell in love with it.”
I can’t wait for the Colour Run. It’s a great way for us to say thank you to Rainbows and celebrate Jessica’s life in the most colourful way.Mel Kerr
She continued; “Rainbows didn’t just look after Jessica, they looked after the whole family, including her brothers and sisters. They really benefited from the sibling support services offered by Rainbows and got to do lots of fun activities. With Jessica taking up so much of our time, Rainbows helped make sure the other children didn’t feel neglected.”
In memory of her daughter, Mel will be taking part in the Northampton Rainbow Run, which takes place on Saturday 26th September at the Racecourse Ground. Participants will get covered with brightly coloured powder as they make their way around the 5k circuit.
“I can’t wait for the Colour Run. It’s a great way for us to say thank you to Rainbows and celebrate Jessica’s life in the most colourful way,” she said.
Katie Baxter, head of community and events at Rainbows, said: “This is such an enjoyable and celebratory event. Anyone can take part and you don’t have to run, it is all about the fun and laughter and of course, raising valuable funds for Rainbows so we can keep supporting families from Northampton and across the East Midlands.
“We want as many people from Northampton to come along wearing a white t-shirt, and running gear they don’t mind getting messy, and we guarantee they will leave with a smile and every colour of the rainbow.”
The event is being organised in partnership with Northampton-based business energy supplier, Opus Energy. Annamarie Petsis Jones, Human Resources Director at Opus Energy, said: “We’re delighted to continue our commitment to Rainbows and the hugely important work it does by getting involved in such a fun event. We believe the Rainbow Run will be enjoyable for all involved and we wish all participants the best of luck as they raise money for this worthwhile cause.”
As well as participants, Rainbows also needs volunteers armed with paint to throw at the participants as they make their way through the colour stations.
Registration opens at 10.30am and entry is £16 for adults, £8 for the under 15s, with concessions for families and teams.