Miles for Matilda

When Susie lost her newborn baby niece she was determined to do something to help other babies survive in the future.

In April 2011, Susie’s sister Alex gave birth to a beautiful little girl, Matilda. She weighed a healthy 6lb 2oz and other than needing a little oxygen and some time in an incubator, she seemed to be doing very well.

Sadly, Matilda suffered a heart attack with other complicating factors, completely out of the blue, and died at 28 hours old.

Here Susie tells us about the impact this has had on the family and why she is so keen to raise awareness and support for Sparks’ research.

“Matilda Harriet Ann Vere was born on Wednesday 27 April 2011. Although born a few weeks early, Matilda only seemed to need a little help, she was doing beautifully and we were relieved and delighted at the news.”

“However, at 5.20am on Thursday 28 April 2011, she suffered the first of four unexpected and catastrophic heart attacks which, despite having some of the best paediatric specialists looking after her, were too much for her. She died at 7.51am, aged 28 hours old, from the condition pneumo pericardium complicating respiratory distress syndrome of a neonate. There are only 42 recorded cases of this globally and to date it is almost always fatal.”

Saying goodbye

“A little over a week after she was born, with Alex still recovering from her C-section, they flew home, bringing Matilda with them, and we held her funeral. She was laid to rest in Stonefall Cemetery in Harrogate. Even now, it is impossible to describe the shock, devastation and overwhelming sense of loss.”

“I learned, as a result of Matilda’s death, about Sparks, the children and babies medical research charity, which aims to advance clinical understanding and treatment of conditions affecting babies, children and mums-to-be. The more research carried out and the more knowledge gained ultimately means fewer parents and families have to go through what we, and too many others, have.”

“As a family, we are determined that something positive should come from our dreadful loss and I have wanted to do something to raise funds for this wonderful charity, in memory of Matilda, for some time; it was just a question of what. Those who know me well will know straight away that marathons and climbing mountains are not my style, but I wanted to do something fairly extreme with the aim of raising a considerable sum.”

Miles for Matilda

“Then I discovered that the Scumrun driving event is supporting Sparks in 2012. So I have entered with my friend and colleague, Sean, under the team name Miles for Matilda.”

“Over 2500 miles across Europe in four days, in a car worth no more than £500 is a huge challenge and one that I can’t wait to take on. Each day’s destination is only revealed in the morning and there are checkpoints along the way that have to be worked out, reached and photographic evidence provided. It’s a huge undertaking but worth every ounce of effort for such a worthy charity.”

You can keep track of Susie’s progress leading up to and during the Scumrun event by clicking “Like” on Miles for Matilda on Facebook, by following @SusieLittle on Twitter or visiting www.milesformatilda.co.uk/scumrun