This is Annie's story

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Annie's dad, Mike, shares his emotional story about his daughter and the support he and his family received from Rainbow Trust after she was born with a rare life-limiting condition.

In October 2018 our beautiful daughter, Annie, was born. The pregnancy was not easy and Annie was delivered early at 38 weeks through an emergency C-section, weighing only 4lbs. Annie was immediately taken away for an emergency blood transfusion due to having an extremely low haemoglobin level. She was also intubated to assist with keeping her alive.

Following a number of tests over the next few weeks it was confirmed that Annie had a rare mitochondrial syndrome called Pearson’s and was not expected to live a long life. We were given a 50/50 chance that Annie would not reach the age of two.

Whilst in Southampton neonatal unit we were referred to Rainbow Trust for support and were paired with Family Support Worker Liz. Liz started giving sibling support to Zach, our older son who was three at the time, through activities, trips to the park and a friendly face to just be there. Liz enabled Zach to have moments of fun and enjoyment, like any other little boy. This meant so much to my wife, Becky, and I as we were trying to juggle hospital life and home life and were both very torn.

Thankfully, we were able to bring Annie home before Christmas 2018 so that we could try to make some memories whilst we were able. However, the medical regime Annie required was extremely intense and Becky and I both struggled to balance this with ensuring Zach had the attention he needed. Liz would continue to visit weekly and give Zach some one-to-one time and make a fuss of him.

Just over a month after bringing Annie home we were back in hospital due to issues with Annie keeping her tube fed milk down. This stay would keep us in hospital for over two months. During this time the support Liz provided was a lifeline. She was there whenever we needed. We had someone else we could call upon to support Zach whilst I stayed in hospital each night and Becky spent day times with Annie.

Other than my mum and dad we did not have any other support. Zach was at play school only four mornings a week so having the additional support from Liz was invaluable. She was able to take Zach out in the afternoons. I was trying to work and, sometimes, I would be able to get a few hours work done in a respite home for families, next to the hospital, while Liz looked after Zach. If it hadn’t been for Liz looking after Zach, I would not have been able to do that.

Thankfully, in 2019, we were able to have a summer with only a few hospital stays and through Rainbow Trust we were able to visit Paulton's Park and Legoland to create some lovely family memories.

However, the hospital stays were more frequent when the usual winter viruses kicked in and we were in the intensive care unit over Christmas and New Year.

Liz continued to be a great support during this time. She also introduced us to Annabel, a Rainbow Trust Volunteer. Annabel also became a trusted friend who was able to offer support to Zach and, even more critical, to Becky as well. She spent time by Becky and Annie’s sides in hospital. A hospital is a very lonely place when you are sitting there day in, day out on your own. To have a friendly person to visit and talk to is priceless.

COVID hit the world in 2020 and lockdown meant we were shielding Annie at home. Both Liz and Annabel continued to offer vital support with running errands for us, picking up shopping and also giving Becky and me a friendly person to talk to from the door.

Sadly, in September 2020, Annie was taken into hospital with what we thought was just a viral infection. However, it was a serious infection which Annie was not able to recover from and on 23 October, a week after her second birthday, she passed away in Becky’s arms, with her daddy looking over both of them. No parent should have to say goodbye to their child and I know my wife and I will never get over this. It breaks our hearts that our son Zach also has to cope with tragedy that no five-year-old should have to experience and live with for the rest of their life.

If it wasn’t for Liz and Annabel we would not have been able to keep going. Both were with us after Annie’s death supporting all of us. They were by our sides at the funeral and Annabel gave a beautiful reading.

I’ve been reflecting on the fact that Annie was in hospital for one third of her life. Over those two years, the support of Rainbow Trust helped us so much as we faced that intense loneliness and isolation that comes with long hospital stays.

Both Liz and Annabel continue to support us through our grief.

I will never have the words that will show how much Rainbow Trust, Liz and Annabel mean to us. Without them I dread to think where my family would be now.

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Continued support for as long as a family needs us

Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

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