Sebastian’s Action Trust

TOTAL RAISED: £27,000

Laura Powell, 47, from Surrey explains how Sebastian’s Action Trust makes a difference to families like hers with seriously ill children

The facts

  • Sebastian’s Action Trust is celebrating its 15th year of supporting families of seriously ill children.
  • Sebastian’s Action Trust supports families and individuals where there is a young person aged up to 19 years old with a life-limiting condition or families who have lost a child, sibling or grandchild.
  • The Trust offers respite holiday breaks at its unique respite home in Hampshire to families from all over the UK – since The Bluebells opened in 2011, more than 700 families from 39 counties have enjoyed a break.
  • Outreach services provided by the Trust are offered to those based in the south-east, principally from Berkshire, Surrey, Hampshire, Buckinghamshire and Oxfordshire.
  • The Trust will shortly be opening its new facility in Crowthorne, Berkshire, enabling more families of children with life-threatening or life-limiting conditions to access its services.
  • For more information visit sebastiansactiontrust.org.

The Candis Big Give

Money raised will help the charity to develop a new Family Outreach Hub to provide an accessible one-stop-shop service provision to families with life-limiting and seriously ill children. This will be a place where they can go for information, advice and support, and to meet others experiencing similar circumstances.

From the moment Ethan was born in October 2000, my husband, Corey, and I knew something was wrong. My pregnancy was full term, at 38 weeks, so we were shocked at how tiny he was – he weighed just 4lb 12oz. I remember saying to the doctors something wasn’t right.

Ethan was taken to the Special Care Baby Unit of Southampton General Hospital, where the staff did all the usual tests for newborn babies, which came back clear, and after two weeks we were allowed to come home. However, just a week later, we were back at the hospital as Ethan had lost weight.

At first, the hospital just monitored his feeding, but I kept asking them to do more tests to find out what was wrong. Eventually, the consultant agreed to some genetic testing – which is not normally done straight away as it is so expensive. They revealed Ethan had a chromosome disorder, which nobody really knew much about.

Although we were fortunate to get the diagnosis early, when Ethan was just five weeks old, we were absolutely devastated. The consultant kept saying how sorry he was, but I couldn’t understand what he was telling me. I remember asking, “Are you saying Ethan is just not going to grow properly, or are you telling me he’s going to die?” We were told they didn’t expect Ethan to live six months. My world just fell apart.

As Ethan got older we were delighted that he continued to beat the odds in terms of life expectancy, but he was also seriously ill. He couldn’t walk, talk or feed himself and was completely dependent on us for everything. He was in and out of hospital for chest and urine infections and was treated for epilepsy. Then, just before his fourth birthday, he started having episodes where he would stop breathing for no apparent reason, so we were trained in resuscitation. In 2004, he stopped breathing 60 times, which was horrendous.

When Ethan was four years old, we discovered he had something called MECP2 duplication syndrome, which is a rare condition mostly affecting boys, caused by problems with the same gene as Rett syndrome. The symptoms are similar to Rett syndrome, including floppiness and mobility issues, seizures, developmental delay, little or no speech, and a compromised immune system. There is no treatment so there was nothing we could do, so again it was just a case of getting on with things as well as we could. We also had three other children to look after – Louie, now 21, Lucas, 15, and Jonas, 10 – so at times we struggled to cope.

In 2013, a nurse I was good friends with told us about the charity Sebastian’s Action Trust. I attended a mums’ sleepover at The Bluebells, in Hampshire, a purpose-built facility run by the charity offering specialist breaks to the families of seriously ill children. It was great to meet other parents in a similar position, who understood what we were going through.

After that, it became like a home away from home for us. If I needed to get the kids out of the house, I could just phone up and ask if we could come down, and unless it was absolutely packed it was never an issue. We attended coffee mornings and family activities, such as Christmas parties and Easter egg hunts, and the charity also supplied an outreach worker providing play therapy and art therapy for our youngest two children, who were also very much affected by Ethan’s condition.

In March 2015, we went as a whole family for a week’s holiday at The Bluebells, which was just fantastic. At first, I was worried it wouldn’t be much of a break for me, but I have never felt so relaxed. We had our own space in the flat they provided, and the staff were so friendly and helpful. They would take the kids off to paint or play in the music or games room, so I could just focus on Ethan. We were also delighted Ethan was able to go in the hydrotherapy pool, even though he still had his PICC line attached to administer medication. It was his favourite thing to do and we loved spending time in the pool having fun as a family.

In November 2015, 11 days after his 15th birthday, Ethan tragically passed away in hospital, with me, my husband and his oldest brother by his side. We have all been completely devastated by his loss and know we will never be the same again.

Since our bereavement, Sebastian’s Action Trust has continued to support us. They phone us every so often to see how we are and have offered a lot of emotional support to us regarding Lucas, who has really struggled since Ethan passed away. It’s reassuring to know they’re still there for support if we need it.

The charity has also set up a group for ‘butterfly families’ who have lost a child, which has a Facebook group and organises sleepovers. It’s helpful to be around other people who know what we’re going through, and I think we can all help each other. There have been times over the years when I didn’t think I could cope, but the charity has made such a difference. It has been like a family to us and given us so much support, as well as some beautiful memories from our time at The Bluebells, which I know we will treasure for ever.

 

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