Eleni Shaw

Northampton

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Currently Eleni's equipment is scattered round the house with no assigned area for it all, her medication and medical supplies are stored in the downstairs toilet, we have to carry her up the stairs to bed and to bath her, and with this there is always a risk of her seizing and us losing our grip on her whilst on the stairs. Believe it or not 80% of the time she will seizure as we take her up or bring her down the stairs. Fairly soon Eleni will be too heavy and long to lift alone so will need a hoist to transfer her from room to room and from her seating to laying down.

(Eleni's equipment stored in the downstair toilet.)

We have applied to the council for a disabled facilities grant which will cover £30,000 of the costs. However after speaking with them, they said with inflation and building costs sky rocketing we are looking at it being more on the £45,000 Mark (and that's

Eleni's medication and medical supplies are currently stored in the downstairs toilet.

mostly for just the shell of the extension and architect fees), so we need to raise a minimum of £15,000 extra, and to have a disability bath, change table and hoist system we will need to raise £35,000 extra.

Family time in the hot tub, Eleni's favourite place.

Since starting the process we have managed to raise £15,000 off our own backs so we have approached Sullivan’s Heroes to give us a hand to raise the remaining £20,000. And unless we can fund this off of our own backs, then the DFG can't be granted.

Our only other options are to wait for a property that is already adapted, which would mean moving from the village we love and moving our other children (1 year old and 7 year old) to another part of the county and possibly moving schools again, leaving our support network and friends. Another option will be to find a house swap but then again we will still need to raise the extra funds OR wait for a new build property that can be adapted whilst being built. 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 !

Eleni in her HUGE P.pod

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.

Our daughter, Eleni, was born on the 5th of June 2019. It was an uneventful pregnancy and the birth was a straight forward elective C-section. 24 hours after bringing Eleni in to the world we were sent home. Even though we thought it was a bit quick to be going home after major surgery, Eleni had all her new-born checks and passed them with flying colours so we were happy to leave.

At 3 days old we were concerned about Eleni, she was becoming floppy and feeding less. Luckily the midwife came that morning and advised we took her in as she was probably just dehydrated and blood sugars may be low due to lack of milk.

We got to Northampton general hospital and I was sat holding and trying to feed Eleni when a doctor walked past and stopped in his tracks and ran over, he took her off my lap, put her on the bed and pressed the emergency button. The next thing we know she had a mask over her mouth and is being bagged to help her breathe. Her respiratory rate was 4 breaths per minute, when a baby should be at around 30-50.

Eleni was intubated and put on a ventilator as she stopped breathing on her own, and due to this we had to be transferred to Leicester royal infirmary’s children’s intensive care. Test after test doctors were struggling to find what was wrong. After Blood tests, MRI, lumbar punctures and EEGS Eleni’s diagnosis was clear. She had a rare metabolic disorder which was life limiting. We were advised to withdraw the life support as she just wasn’t breathing on her own and wouldn’t without the help either. 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, then Neil and I looked at each other, she was breathing, it was getting stronger by the second. Everyone was gobsmacked. Despite this revelation though we were still sent to a hospice for end of life care in which we spent 4 days before taking our amazing, ferocious, fighter of a daughter home.

Eleni was diagnosed with a rare metabolic condition Non ketotic Hyperglycinemia (NKH for short) NKH affects 1 child in every 76,000 born there are approximately 15 kids in the UK and 500 worldwide living with this condition.

Sadly 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.

Eleni suffers seizures every day (between 5-30 on average). She is fully tube fed, has low muscle tone, non-verbal, non-mobile, has minimal communication, global development delay, visual impairment, scoliosis and requires 24 hour round the clock care.

Eleni brings our family so much joy and makes us appreciate every single day. She has brought out a strength in everyone around her that we never knew we had. She truly is just pure and amazing in every way !