Northamptonshire supporters needed for children’s hospice at Christmas

Eleni Shaw, of Wootton, has nonketotic hyperglycinemia, a disorder characterized by abnormally high levels of a molecule called glycine in the body that causes serious neurological problems. She has anywhere between two and 20 seizures a day and needs round the clock care. The family are supported by Rainbows Hospice for Children and Young People.

Now Eloise is asking people in Northamptonshire to support the Rainbows’ Christmas Appeal to help families like theirs.

It costs around £6.6 million per year to run the hospice and Rainbows only gets around 18% of its funding from government bodies - which is enough to keep its doors open for roughly nine weeks. For the rest of its funding it relies on supporters – every gesture counts, every penny matters.

For Eleni’s family, Rainbows has been a lifeline.

Life for Eleni started out the same as any newborn but concerns were quickly raised over the amount of time she was sleeping and not responding to feeds.

“We went for tests at Northampton General Hospital and she was on my lap feeding when a doctor stopped in his tracks,” said Eloise. “He grabbed her off me and put her on the bed and began resuscitating her.”

Eleni’s temperature was so low at 34.5 degrees and Eloise watched on in horror as her daughter was close to death. A tiny Eleni was transferred to Intensive Care at Leicester Royal Infirmary where she continued to show no signs of improvement. She wasn’t waking up, she wasn’t moving and her breathing was being done for her by a ventilator.

“Myself and her dad, Neil, were terrified. We didn’t have a clue what was going on,” said Eloise.

“At nine days old she was diagnosed with nonketotic hyperglycinemia and the prognosis was very poor. We were told that if she was to survive, she would live a life of seizures, be severely disabled and not much quality of life. Because she wasn’t breathing on her own, we had no other option but to say goodbye.

“At 11 days old, the whole family gathered to say goodbye, including her then 14-year-old sister, Keira and her then four-year-old brother, Jenson. We told Jenson that Eleni couldn’t come home with us and he was so upset.”

Eleni’s ventilator was removed and her family waited. Eloise held Eleni waiting for her to let go. But she didn’t. “She didn’t go blue or struggle like we were told to expect,” she said: “Her oxygen levels started to go up and she got stronger. Doctors said nothing was going the way they expected. Nothing happened for the next 24 hours. We were waiting for the inevitable but in the back of my mind, I kind of knew. I knew deep down that she wasn’t going to die. It didn’t feel like the end of her life.”

She was then transferred to Rainbows for end of life care.

Eloise said Eleni turned a corner at Rainbows. She said: “We got settled and it was amazing. We didn’t have to do anything. A few hours in and I asked if I could try her on a bottle and she took it straight away. After a few bottles, her feeding tube was taken out and she was doing everything a newborn should be doing and eventually, we were allowed to take her home.”

For 18 months, Eleni seemed to thrive. But for Eloise, this felt like a cruel twist of false hope. “I knew from talking to other parents of children with the same condition, that she would deteriorate.

“We decided to get support from Rainbows. I had originally avoided the hospice, as we were there for end of life care and in my thoughts that was the sole purpose for us. But I realised there was more they could offer, and it was different the next time. Jenson benefited from sibling support and we all got respite care.

“Rainbows generally makes life easier day to day and helps us to try and get our heads around end of life care, which we know we will need one day.

“And Eleni loves it. She is very chilled and relaxed at Rainbows. Coming from a house of two boys – we now also have Billy, who is almost two - that are crazy, she loves the gentle atmosphere and all of the staff know what she likes.

“The boys love it too. They love the soft play and swimming. Jenson is always excited about Rainbows and sees it as a holiday.

“For now, we enjoy what we can. The future? I do think about it but then I kind of think, we will deal with that when it happens.”

Nishil Saujani, acting Director of Support Relations at Rainbows, added: “We know times are really difficult for everyone right now but there are hundreds of babies, children and young people who need our care and support, and for some, this will be their last Christmas with their families.

“As the only children’s hospice in the East Midlands, Rainbows is essential to so many families and we really hope you can support us with a donation, no matter how small.”

To support Rainbows Hospice for Children and Young People, visit rainbows.co.uk/christmasappeal