Guest post: "My son's photo was used fraudulently - but I won't stop sharing his story"

[MumsnetGuestPosts]

A stranger contacted me last week because she had recognised a photograph of my son on a fundraising page. The message was a shock - because Hugo had died in March 2014, aged just 35 days. But his photograph, which my husband and I have shared widely online, was being used in a fraudulent fundraising attempt. It had been set up by someone I had never heard of and who was claiming to be his mother.

I was disgusted by the thought that someone would take a photo of a baby who had died and use it for their own financial gain. But while it made me think again about why I use Hugo's picture to raise awareness, the experience has also made me certain that I won't stop talking about and sharing what happened to our family.

Hugo had been born 16 weeks prematurely to save both our lives: I had the rare, life-threatening pregnancy conditions HELLP syndrome and pre-eclampsia. During his life, Martin and I posted daily photos of our son along with progress updates on Facebook. It was a good way for us to track the day-to-day chaos of the neonatal unit, as well as keep friends and family up to date without having to tell the story countless times.

We received so much support through these updates, support that kept us going through those long (but all too short) days and nights that were so special yet full of utter torture.

Since Hugo's death I have been campaigning for better awareness of HELLP syndrome, and for a greater cultural understanding of life as a bereaved parent. Photos of my precious boy have been used on my blog, Headspace Perspective and elsewhere with my permission to help raise this awareness. I do this with the knowledge that I cannot change anything that has happened to me, but I can help other families. It's Hugo's Legacy and any funds raised through my blog go into promoting my campaign in his memory.

So the Facebook message from a stranger last week who had seen Hugo's photo being used fraudulently brought an unpleasant shock. Thanks to this stranger’s vigilance, the page was swiftly removed. Thankfully, no money had been donated.

The fundraising page – on GoFundMe – was set up by a woman purporting to live in the US state of Virginia. She was asking for help to raise $10,000 for hotel bills while her son Averie, born three and a half months prematurely, was fighting for his life in hospital. The woman said on the page that she had been on bed rest while pregnant, but still her son was born early and was struggling with lung problems.

I have no proof this woman isn’t in such a situation - but the photo was not of her child. The page didn't contain much detail: although it featured a picture of Hugo, there was no birth date or birth weight details of her baby, the hospital wasn't named and there was no mention of medical fees (particularly high for premature babies in America).

We have shared photos of Hugo because we are so proud of him and want to share him with the world. All our blog posts have been written from our hearts as a way of expressing our grief, as well as to help others through times that you would not wish on any parent.

You could say that once something is on the internet it is free for anyone to take. But that's like saying publishing a blog means you're bound to be trolled. There are positives and negatives for sharing things online. For me, the support I have received and the support I am able to give to others means it feels overwhelmingly positive.

The majority of people are kind-hearted and are likely to open their wallets to help someone in need, even if they don't know them. Sadly, it can pay to be cynical – the advice on the GoFundMe page is to donate only if you personally know and trust the fundraiser.

There are of course many genuine fundraising efforts by individuals and charities alike. Thankfully, deceitful people are in the minority. I am glad that the issue was swiftly resolved, and grateful for the vigilance of the stranger who alerted me to the page. I am thankful too for my friends who offered generous support to resolve it.

The reach of Hugo's story makes me feel very proud – I won't let one negative experience stop me supporting others, and receiving support in return. I shall continue to write about my son, and to campaign. Fighting negativity through kindness and awareness is a key part of Hugo's Legacy.

[callherwillow]

I'm sorry about your experience, Leigh and you are brave to continue.

Please accept my sincere condolences on the loss of your baby son

[GlitterGlassEye]

I'm so sorry for the loss of your baby. What a wicked thing for someone to do. Done without thought of the grieving families. As a mother I cannot imagine the pain you must feel without the added stress of this deception. I send you and your family my condolences .

[StrawberryLeaf]

What an awful thing to happen and I'm sorry for the loss of Hugo.

This sort of thing terrifies me to be honest, I lost my baby daughter 7 years ago, she was also in neonatal. It really scares me that someone could do something like this.

[Scottishthreeberry16]

Did they apologise for the hurt they caused you? It must have been heart-breaking and, of course, they had no right. No right at all - because, apart from the sheer inhumanity, it's identity theft. The only way to understand it, if anyone had a mind to, would be to acknowledge that the internet is a free-for-all; that morals, values, ethics don't apply. But of course, for many, they still do and I think eventually, we will all come to support a more person-centred usage. You must have been so distraught. I know that I would have been. I'm so glad the page was removed.

[hollyisalovelyname]

My sympathy to you and your family on the loss of your baby son.
The awful things people do make me despair.
But there are more good people in the world than bad.

[Elllicam]

I'm so sorry for your loss, what terrible people to fraudulently use the photo of your precious son.