Northampton mum's plea for help to raise thousands so family home can be adapted to care for severely disabled daughter

Two-year-old Eleni suffers with a 1 in 76,000 life-limiting condition that has left her disabled and prone to uncontrollable seizures

By Megan Hillery
Wednesday, 9th February 2022, 7:30 am

A Northampton mother is trying to raise funds to build a much needed extension so that her home can be adapted to care for her severely disabled daughter.

Eloise Sarah Latimer, 28, lives with her partner, Neil Shaw, and their three children - seven-year-old Jensen, two-year-old Eleni and one-year-old Billy - in Wootton.

Eleni was born on June 5, 2019 via C-section. Her mother, Eloise, describes the birth as 'uneventful' and Eleni passed all the necessary newborn checks so she was able to go home the following day.

Neil with his eldest daughter Keira (back left), son Billy (front left) and daughter Eleni, two.

However - three days later - Eloise and her partner grew concerned about their baby.

Eleni was becoming floppy and feeding less. She was taken to Northampton General Hospital where a doctor went to walk past them, immediately stopped in his tracks, took Eleni and laid her on a hospital bed then hit the emergency button.

Suddenly, a mask was being put over Eleni's mouth and doctors were using a bag to help her breathe. Her respiratory rate was just four breaths per minute. It should have been around 30 to 50.

This was not the first time Eloise had gone through an ordeal like this. Her eldest son, Jensen, had sepsis as well as heart and kidney problems when he was born.

Eleni, two, lives with Nonketotic Hyperglycinemia (NKH).

Eloise, recalling those moments of panic, said: "My seven-year-old had problems at birth and I thought, 'not again.' We thought we had a perfect pregnancy. I just wanted to stay away from hospital. I wanted the experience to be completely different.

"Me initial reaction was like, 'I can't do this again,' and then it was just shock."

Eleni was intubated and put on a ventilator as she had stopped breathing on her own. She was transferred to Leicester Royal Infirmary's paediatric intensive care unit.

During this time, Eloise was suffering with complications of her own. She had contracted appendicitis and had to have emergency surgery.

Eloise and Neil.

This left Neil having to dart back and forth to check on the wellbeing of his newborn daughter and his partner.

Eloise's surgery was successful and she returned to her daughter's side as soon as she was able.

Doctors ran test after test and Eleni was diagnosed with an extremely rare life-limiting metabolic condition called Nonketotic Hyperglycinemia (NKH). It affects one child in every 76,000 born.

The mortality rate for children born with NKH is high and many die before they make it out of toddlerhood. Those that survive are often extremely disabled with uncontrollable seizures.

Eloise said: "When they sat us down and gave us the diagnosis, it was just a blur. There was 11 people sat around us with sad faces. The nurse was holding my hand and crying."

Eleni's parents were advised to withdraw her life support as she was not breathing on her own and would not be able to without assistance.

Eloise and Neil were left with no choice but to do the unthinkable - let their baby girl go.

Eleni's family gathered in the family room to wait for the inevitable but little Eleni had different ideas. The breathing tube was removed and Eleni continued to breathe on her own.

Eloise said: "The nurse came in half an hour later and me and Neil looked at each other and the nurse said, 'she's breathing. I can tell from the monitors she's actually not going anywhere at the minute.'

"From there, the doctors were like it may happen in an hour or two hours or 24 hours."

Eloise and Neil were sent to the Rainbows Hospice in Loughborough for end of life care, where they spent four days before finally taking their little girl back home.

Eleni's condition, however, means that she now needs around the clock care as well as home adaptations to accommodate her life-limiting disability.

Medical equipment is currently scattered around their house with no designated space for it, Eleni's medication and medical supplies are stored in the downstairs toilet and Eleni has to be carried upstairs to bathe bed her and for her to sleep.

Eleni's parents will struggle to get her around the house safely as she grows with age.

Eloise said: "Some nights, she won't sleep because she is having seizures a lot and we have to be there for her whilst she is doing that. The main reason we want those adaptions is so that night carers can come in.

"It is just not possible to do that upstairs because she is in our bedroom and you can't leave her because she needs that 24 hour care.

"She's very sensitive and her seizures are triggered by minimal touch like if you touch her to wake her up."

Eloise and Neil need to build an extension on their home, which will provide a ground floor bedroom, wet room, a fold-down adult size changing table and storage space for Eleni's medical equipment and medications. They will additionally need a hoist to transfer Eleni safely from room to room and to allow her to lay down.

They have applied to West Northamptonshire Council for a disabled facilities grant, which will cover £30,000 of the costs. However, with inflation and building costs sky-rocketing, the total costs are predicted to be around £45,000.

Unless these additional costs are funded by Eloise and Neil, the grant cannot be provided to them. They will need to raise between £10,000 and £15,000 off their own backs to secure the grant.

The only other options the family has is to uproot their lives, leave the area they love and move to another part of the country to a property that has already been adapted, find a house swap or wait for a new build property that can be adapted whilst being built.

Eloise said: "All these options take time - time that we don't know if we have with Eleni - and we want to make her life the most enjoyable and the best quality it can be.

"Also, having this extra space will open opportunities up to carers coming in and helping a very tired and exhausted mummy and daddy out.

"We are grateful for every single penny that is donated. I don't know what to expect from setting this up, but the only way to find out is to wait and see.

"We are emotionally drained, our hearts are shredded and physically we are burning out. Having this money will mean we can have a smoother ride on this very extremely choppy ocean."

Eloise and Neil have, so far, raised £9,290 out of their £10,000 minimum goal to fund the extension on their home in just two days.

To find out more about the fundraiser or to make a donation, visit Eleni's Go Fund Me page.Joseph's Goal is UK charity that was set up to raise awareness of NKH and to raise funds for research. To find out more about this charity or make a donation, visit www.josephsgoal.org.