Nottinghamshire family support hospice Easter campaign

These are the words of Sherelle Ramus, whose 14-year-old daughter, Hannah, was born with Partial Chromosome 18 Q Deletion.

Her condition means Hannah is unable to do things for herself and needs round the clock care, but Sherelle and her husband, Lincoln, have adopted a positive outlook on life.

“She laughs and it’s infectious,” said Sherelle, who lives in the Bulwell area. “When I am stressed, I put my head next to Hannah’s and it calms me. Having Hannah has changed our life completely. Hannah has taught Lincoln and I so many things, and made us better people and parents. She has taught us to have more patience, to look after our health and to definitely appreciate what we have.

“We found out during pregnancy that Hannah would have difficulties. Doctors were not hopeful that Hannah would even survive birth, if she survived, they thought she would die soon after. Labour was traumatic but we had faith and we prayed that she would survive. As I lay in theatre, it was the worst feeling ever.”

“Hannah spent many weeks in the Neonatal Intensive Care Unit. We have spent the best part of three years in and out of hospital, we have had lots of Christmases in there. In Hannah’s early years - that was just our life.”

Hannah has six siblings. Three younger sisters live and play with her at home, Anayah, aged 10, nine-year-old Sophie and Abigail, eight, while she has three older siblings in London.

Seven years ago, the family discovered Rainbows Hospice for Children and Young People, the East Midlands’ only hospice for babies, children and young people with serious and terminal illnesses.

The help of the charity has been invaluable to the Ramus family and Hannah adores her visits.

Sherelle and Lincoln are now supporting Rainbows’ Easter campaign, which encourages people to donate the value of an Easter egg to the hospice, rather than a chocolate egg.

Unfortunately, about 80 per cent of the babies, children and young people who go to Rainbows are unable to eat, because of the complex medical conditions they have.

This is due to dysphagia, the medical term for difficulty swallowing. Those that access Rainbows with dysphagia will often be tube fed through a nasogastric tube, or gastrostomy straight into their stomach, meaning treats such as chocolate are not suitable.

Sherelle said: “It is fantastic that people want to support Rainbows at Easter by donating chocolate, but for Hannah, and so many others, eating chocolate just isn’t an option. Rainbows does so many incredible things and it relies on donations to exist. It would be wonderful if people were able to donate the cost of an Easter egg rather than the chocolate.

“Rainbows really is incredible for us as a family. When Hannah was younger, I felt isolated. Lincoln was working long hours and really wanted more support for me while he was away. There was so much going on and I didn’t trust anybody with Hannah, and I just had no breaks. I was told about Rainbows and for the first time I felt I could leave Hannah with someone that wasn’t part of our family.

“On Hannah’s first visit we stayed in the rooms for parents, whilst she stayed in the care area. Just watching them care for her fuelled our confidence in the staff, that they would care for our Hannah. She had a great time there and we felt peace that Hannah was going to be okay.”

Sherelle said one of best experiences for Hannah at Rainbows was the hydrotherapy pool.

“In the pool her body could feel alive, and she could move. We went in there as a family and we loved it,” she said.

“The first time I didn’t stay with Hannah, it was hard, but I got a full report of what she had been doing and I could call at any time. When Hannah stays at Rainbows, she is a 14-year-old child on holiday, just like any other teenager.

“We love how the staff play with her. I have watched her be cared for and Hannah always looks happy. Rainbows gives you confidence to release a child and that doesn’t come lightly for us.”

Hannah moves around in a wheelchair with a portable speaker attached, music is her world. She always has a tune playing and often has the staff at Rainbows singing and dancing.

“We are a very musical family,” said Sherelle. “Lincoln plays lots of instruments, I sing and the girls are learning to play instruments too. I always sing to Hannah, and she is always around music. She just loves music.

“The last 14 years has been a journey for the whole family, and we are still on that journey. In the next few months, Hannah will have a spinal operation, and we trust in God to ‘carry her through’. We have been blessed with four happy girls and we are taking each day step-by-step in faith.”

To donate to Rainbows, visit rainbows.co.uk/easter