Date published: 21 June 2021 by Amber Hemming
A bereaved Dad is fronting a fundraising campaign for Rainbow Trust, as we provided vital support during his daughter Annie’s short life.
Mike is sharing his emotional story about Annie and the support he and his family received from us after she was born with a rare life-threatening condition in October 2018.
His Rainbow Trust Family Support Worker, Liz, and Rainbow Trust volunteer, Annabel, provided vital emotional and practical support to his family, including his five-year-old son Zach, throughout Annie’s illness and following her death in October 2020, a week after her second birthday.
Mike is sharing his experiences to help Rainbow Trust raise much-needed funds after our income has been dramatically impacted by COVID-19.
Mike says:
“I will never have the words to show how much Rainbow Trust, Liz and Annabel mean to us. Without them I dread to think where my family would be now. By sharing my story I hope to raise awareness and funds for this incredible charity that has helped my family so much through our tragedy of Annie’s death.”
Annie was born at 38 weeks after a difficult pregnancy, weighing just 4Ibs. She was immediately taken away for an emergency blood transfusion due to having an extremely low haemoglobin level. She was also intubated to help keep her alive.
Over the next few weeks it was confirmed that Annie had a rare mitochondrial syndrome called Pearson’s, and Mike and his wife Becky were given the devastating news that there was only a 50% chance that Annie would reach the age of two. Mike says:
“Whilst in Southampton neonatal unit we were referred to Rainbow Trust for support and were paired with our Family Support Worker Liz.
“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 and the support Liz provided was a lifeline. She was there whenever we needed. Other than my mum and dad we did not have any other support. Suddenly 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.
“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.
“Sadly, in September 2020, Annie was taken into hospital with a serious infection which Annie was not able to recover from. 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.”
Our Family Support Workers provide bespoke support to families as they grieve, having been there throughout a child’s illness. They can help with plans that need to be made, such as accompanying a parent to register the death, arranging where the child is cared for before the funeral and the funeral itself, as well as offering vital emotional support to family members, including siblings.
The death of a child is the hardest thing any parent can experience and there can be many challenges to face. But it can be a comfort to know that a Family Support Worker like Liz can be there to support for however long is needed.
Please consider donating to Rainbow Trust today and help us support more families caring for a seriously ill child. You can also read Annie's full story here.
