Annabel’s story

“Small but mighty” is how anyone who met Annabel would have described her.

Annabel had a condition called Cockayne Syndrome or CS. CS is a very rare and
life-threatening condition passed on through a faulty gene from both parents. There are only two to three people per million worldwide with CS. There are three subtypes – Annabel had type two which is the most severe.

Annabel had a number of complex care needs – she was able to roll over and could sit independently for around 10 seconds dependent on her mood. She was tube fed and suffered from severe reflux for which she needed medication three times a day. She had hearing loss in both ears, cataracts in both eyes and recurring chest infections which required regular antibiotics, steroids and inhalers. These became more and more frequent, needing daily, sometimes hourly medication and a home suction machine to keep Annabel comfortable.

Annabel was in and out of hospital throughout her life, until in June 2020 she made her final trip to the Queen Elizabeth Hospital in King’s Lynn. She sadly died in hospital aged five years-old. Annabel’s parents, mum Kelly and dad Gary requested to be transferred to The Nook, EACH’s Norfolk hospice, so they were able to spend some time together before they returned home.

Kelly and Gary are sharing their story to raise awareness of the bereavement support they have received from EACH.

Kelly, explains: “When Annabel was diagnosed with CS when she was six months-old we were told she probably wouldn’t live past her third birthday. CS affected Annabel’s development, she didn’t really meet any milestones physically or mentally but made up for it in personality! Annabel was a true Leo, a red headed diva – although she was small, she was mighty and only did what she wanted to do.

“We were under the care team at EACH when Annabel was about three, so we had regular contact and had considered some overnight stays. We were put off by the word hospice, we assumed it would just be end of life care and I thought it would be sad and scary. When we went there with Annabel for those two days, just the three of us, I realised it really wasn’t at all like that.

“When Annabel gained her shiny wings in hospital and we were asked where we’d like her to go. It was always our plan for her to go to the hospice but because of COVID we weren’t sure what was going to be possible. The amazing staff on Rudham ward arranged for us to go to The Nook, but we were told that no one would be able to visit us while we were there due to restrictions.

“The Nook was such a safe haven for those 48 hours – it was quite literally pure bliss. We had our own corridor, we had our meals cooked for us – we didn’t have to worry about anything. We were left alone as much as we wanted but we knew that someone was there to support us and nothing was too much trouble for the staff. It was our final time to spend together as a family.

“From the moment we got to the hospice Amy, our EACH Counsellor, was there. She helped us to make memories even after Annabel had passed – she did casts of her hands and it felt to us like she almost knew Annabel, even though she had never met her. She talked us through everything, what we needed to do and she took the time to get to know us as a family. She helped us to plan Annabel’s thanks giving service when we were ready but didn’t rush us into thinking about that when it felt too soon.

“After we left the hospice we started weekly one-to-one counselling sessions with Amy. These had to be virtual, again because of COVID restrictions. These sessions helped us so much – they took us through what we were feeling and showed us it was ok to feel those things. The difference these sessions have made is huge to us.”

Gary talked openly about his concerns of returning home after their stay at The Nook. The impact of having immediate bereavement support from EACH made a real difference. “Going to The Nook for those two days probably saved my life. I probably wouldn’t still be here but because I had that immediate counselling from Amy it saved me. I really didn’t want to go home after Annabel passed. Because we left for the hospital in such a rush everything was just left – her bed was literally as we’d left it and I didn’t know how I would cope with that. Amy talked us through everything – encouraged us to take pictures of how things were when we arrive so we have those memories to look back on if we ever want to.

“As well as our one-to-one sessions we are now part of a bereavement group – again all virtually currently due to COVID. I was adamant I didn’t want group counselling – said it wasn’t for me. But it is nice – there’s another dad who is also a football fan so we have some banter and it’s good to talk to other people who have been through the same experiences. It’s somewhere we can say what we feel with no judgement – you’re with people who understand because they are going through the same thing.”

The pandemic and national restrictions had a big impact on Kelly, Gary and Annabel. The family were shielding from March 2020 so were unable to get support from friends and family and it was more difficult to get medical intervention for Annabel as she was so vulnerable.

Kelly said: “Because we were shielding no one was able to see Annabel from March, other than on a video call. I think what hurts the most is that no one got to say goodbye to her – our family and friends didn’t get that opportunity. COVID has effected so many things.”

Kelly and Gary will continue to receive support from EACH.

Kelly added “EACH are such an amazing support for families when a child is still alive but even after a child has passed they are still there – for as long as you need them for.”

 

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100). 

 

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