My Story

I am taking part in Pier to Pier 2022 in aid of East Anglia's Children's Hospices. EACH cares for children and young people with life-threatening conditions across Cambridgeshire, Essex, Norfolk and Suffolk and support their families.

Apparently the first time I met Rebekah Barber (Becca) I kicked her………..! It wasn’t my fault, I didn’t do it on purpose; my Mum was meeting her for the first time and laid her across me (the bump). From there onwards she was my favourite friend…….!

Lots of my early years were spent with Becca and her siblings as we went to lots of places together. Normally watching our big sisters doing their dance practice or dragging the other siblings on the school or pre-school run. We went to pre-school together and I adored Becca. I didn’t want other children to play with her because she was “my friend”.

Obviously as a small child I realised that there were differences between Becca and I, but never really understood the reasons or the nature of her condition. I’m a boy, what do you expect!

Becca was diagnosed with Lissencephaly or “Smooth Brain Syndrome”. Her family were told that she had a life expectancy of 2 years. I’m so glad that she proved them wrong and made it to 10 years.

As we grew older and Becca had more and more hospital visits, and Mum used to turn into Mary Poppins, walking up the street with countless children on the way to school, I began to realise that this was something that would not get better. I realised that Becca would not be able to do the things that I could, and that really made me sad for her. Becca wasn’t a sad person though. She had a lovely smile and she loved her puppets and a sheet of foil would always make her laugh. I used to really love playing with her musical toys. I didn’t have cool toys like that.

As she grew older she needed more help and more hospital visits so I didn’t see her as much as I used to, and she went to a different school from me. She looked brilliant in her school uniform though. I still spent lots of time with her siblings though, and her older sister Charley is still one of my best friends. I have spent lots of time with Charley, and up until 2 years ago we used to compare height. Now I just tower over her!!! I won! She is like a sister from another family, my God-parents, Carol & Alan.

Her 10th birthday party was the best party I have ever been to, especially seeing as we were celebrating her making it to 10 years old. Her cake was brilliant and had Little Bo Peep and a huge sparkler candle on it.

The day we lost Becca was a very sad day for us all, and the light was not so bright. I remember it well, feeling really sad. I had lost my Grandma a couple of months before that, and I couldn’t understand why I had to lose Becca too. At Becca’s funeral we all wore something yellow or purple. I still have my yellow tie. I will be carrying something yellow on my walk, in memory of Becca. Maybe I can find a sunflower………..

From Carol (Becca's Mum)

"When Rebekah (Becca) was almost a year old, we received the news that she had Lissencephally. Our world fell apart. Our life became full of hospital appointments, therapy sessions and medication management. It was such an answer to prayer when we were offered a visit to EACH Milton.

At the hospice we were able to stay as a family with meals provided and Becca had the full attention of their nursing and care staff. As parents, we were able to spend some quality time with our other children knowing that Becca was close by.

As our other children got older, they were able to attend sibling groups. These groups saw them meeting with other children who also had siblings with complex and life limiting conditions. It gave them a space to share their concerns and worries that was safe and understanding. For the first time they were being allowed to take part in something fun BECAUSE their sister had lissencephally , rather than having to miss out on things because Becca was ill or in hospital. Friendships they built during those days continue today.

When Becca passed away in 2016, EACH offered us lots of emotional, physical and mental support. Each year they hold a memory day which allows us to remember Becca in the place she enjoyed, together with other families who were walking the same path."