‘We were advised to withdraw her life support,’ says Northampton mum, who’s daughter has a rare metabolic condition
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Eleni wasn’t expected to live past the first week of her life and yet she battles on, despite what parents Eloise Latimer and Neil Shaw were told by doctors. She lives at home with her family but is in desperate to raise money to build the appropriate facilities to help her in the future.
Eloise said: “We are raising money to build an extension for a downstairs bedroom and bathroom for her, giving her own safe place to be. This is becoming more important now as she is growing. It isn’t safe to be taking her up and down stairs as she has multiple seizures and she’s getting bigger and heavier. She really needs downstairs facilities so we can stay here with our friends and family around us.”
The family applied to the council for a grant to put towards disabled facilities at their home which will cover £30,000 of the costs. However, after getting quotes and the cost of living increasing, they are looking at needing a minimum of £45,000 to undertake this work.
Eliose added: “If we can’t get this extra needed off our own back, the disabled facilities funds won’t be granted.”
After realising this shortfall and not wanting to be put into a home elsewhere with adapted living already in place, Eloise has gone about some incredible work to get the fundraising going. She initially put a Just Giving page together and after many read the heart breaking story of Eleni’s condition a whopping £10,000 was soon raised.
Organisations such as “Sullivan’s Heros’ supported Eloise by contacting charities for grants and organising fundraisers have helped raise around £8000. Owners of The Cock pub in Roade have also helped with the fundraising for Eleni and held a charity golf day and a race night, raising £4800.
NKH affects one child in every 76,000 born, with approximately 15 children in the UK and 500 worldwide currently living with this condition. There are advances in the research for gene therapy treatment for this and Eloise and her family are wanting to raise awareness of this condition to help others in the future.
Eleni, was born on the 5th of June 2019 after an uneventful pregnancy and straight forward elective C-section. However, 3 days later Eloise became concerned about Eleni as she was becoming floppy and feeding less. The midwife advised she should be seen at hospital and they thought this was probably just dehydration and a low blood sugar level.
Eloise said: “After arriving at Northampton General Hospital it was quickly realised something wasn’t right with her breathing and with a rate of 4 breaths per minute (instead of an expected 30-50) she had mask put over her mouth and a bag was used to help her breathe.
“She then stopped breathing on her own. She was intubated and put on a ventilator. She was transferred to Leicester Royal Infirmary children’s intensive care where doctors struggled to find out what was wrong. After blood tests, MRI, lumbar punctures and EEGs, the diagnosis was made. Eleni had the rare metabolic condition nonketotic hyperglycinemia.
“We were advised to withdraw the life support as she just wasn’t breathing on her own and wouldn’t breathe without it. So we made the tough decision to let our baby girl go.
“The day came and all her family was surrounding her before we took the tube out. Everyone left to sit in the family room to wait for the inevitable, but Eleni had different ideas. The tube came out and we cried and sobbed. Neil and I looked at each other, she was breathing, it was getting stronger by the second. Everyone was gobsmacked.
“Despite this revelation, we were still sent to a hospice for end of life care. Amazingly, after 4 days we took our ferocious fighter of a daughter home.”
When asked how the fundraising and extension would impact Eleni and the family, Eloise said: “It would have a huge positive impact on Eleni and our family in general. With Eleni getting bigger, naturally all her equipment is getting bigger too. Her medical equipment like the syringes, feeding tube supplies, milk and medications are all stored in the downstairs toilet and other places in the house and it all needs to be kept together.
“For Eleni to have her own bedroom it would mean she has her own space and most importantly, her dignity. We will need space for a hoist system to lift her, she is nearly 4 years old, 20kg and 1 metre tall, so lifting her safely isn't going to be possible for much longer.
“The extension will also make room for Eleni to have a specialist bath that rises up and down, so it's safer for her and us to bathe her. She really enjoys the water and a warm bubble bath gives her amazing therapeutic benefits because it relaxes her stiff muscles.
The extension will have level access to the garden so in the summer months Eleni can enjoy the outside with her brothers (Jenson 7 and Billy 2), especially when she is ill and we can't take her out. It will also provide space for an extra fold out bed to be put in her room, because at the moment I am sleeping on the sofa in the living room because it's not safe for Eleni to be left alone in case she has a large seizure. Overall, the adaptations to our home are paramount in providing Eleni with the care she needs and deserves, also for our family, so we can have some sort of normality in this less than normal path our lives have taken.”
You can help Eleni and her family with donations here.