Memorial for Aiden and Lucas the amazing twins with NRROS

I am the nannie of 2 special identical twin boys Aiden and Lucas who were born May 2021

Their development was normal.Two little boys who were happy cheeky always laughing and full of mischief.

Out of the blue when Lucas was about 15 months old he had a massive seizure and had to be given a special drug and emergency dash to the hospital after a seizure lasting 20 minutes.

6 weeks later the same thing happened to his brother Aiden but his first seizure lasted 30 minutes.

Both twins were started on anti seizure medication as their seizures became more frequent

Gradually as their seizures became more frequent they started to experience a rapid decline in all their development., no longer being able to feed themselves and eventually being.fed by a nasal gastric tube

Even the ketogenic diet was tried in the hope they would improve.

Their mum looked after them both entirely on her own learning how to change nasal tubes, administer oxygen and even use a suction tube to withdraw rubbish from their chests.

On December 14th at 4pm Lucas passed but his mum tried desperately to save him giving him CPR while waiting for the ambulances to arrive .

He was buried in January 2024 .

His brother Aiden passed exactly 6 weeks after Lucas at 4 am in the morning on January 26 2024.

Genetic tests showed they had the rare NRROS which was only identified in March 2020 and when they were diagnosed there were only 9 other known cases that had been identified worldwide.

We have managed to raise some towards the headstone but are over £3000 short.

My daughter wanted a special headstone to commemorate them as they only had 15 months of normal life and the rest was spent with multiple daily seizures which were heartbreaking to watch.

They were only 2 when they died so missed out on so many birthdays, girlfriends, cars etc and the chance to have a normal life.

I know it seems cheeky to ask but if you could just spare 1 or 2 pounds it would all add up

Their story is on facebook

Aiden and Lucas the amazing twins with NRROS

and there is another group on facebook about memory stones for Lucas and Aiden.

The stones them have been taken worldwide by so many lovely people who have found them . To such places as Everest , Lapland,Lanzarote, Turkey, Cuba, Egypt and many places worldwide and in the UK

This keeps their memory alive and helps the family who will never get over the immense loss of 2 special little boys especially their mum and dad and big sister Josie.

If you can help that would be amazing.

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