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Summer Appeal 2017 - Essie ‘my little tortoise’

“I call my daughter Essie ‘my little tortoise’ – because every day this brave little girl takes another small, slow step forward in the face of immense medical challenges”

Essie 5My name is Lorna and my daughter Essie and our family are being cared for by Chestnut Tree House, our local children’s hospice.

Essie is a triplet and was born eight weeks prematurely with her sister Eva and brother Roman on 1st February last year. Within a few days we were told that Essie had suffered a catastrophic brain injury at birth; her brain had collapsed in on itself and had been replaced with large pockets of fluid. That’s why Essie has a beautiful teardrop-shaped head.

We were told to expect that she would have no sight, no hearing, no mobility and no communication and that it was very unlikely she’d survive for more than a few weeks. But, Essie is still with us. She can hear and she can see. This is her being a tortoise – because slowly, steadily she moves forward and every day she proves her diagnosis wrong. She is, quite simply, an inspiration.

But while Roman and Eva are fit and healthy, the reality is that Essie is a life-limited child. This means that we wake up every morning knowing that this could be our last day together with her.

There’s no way we could have made it here on our own. The fact that we have, that we have managed to have 16 months together as a loving family is simply down to the help of Chestnut Tree House and their nurse Mel and her colleagues.

Tortoisesx6

Mel has been with us from the day Essie was discharged from hospital. Essie is such a challenge to look after, there are so many changes in her condition every day and it takes expert nursing care to understand that she may be overheating or having a seizure, which could potentially end her life. Essie has to be cared for by someone that knows her, knows the signs to look out for and has the knowledge needed to act quickly in an emergency. And that’s what Mel and her colleagues do. (You can read a letter from Mel here)

Now, as I write, Essie is once again very unwell. She has been going downhill for a few weeks now and we’ve taken her back in to Chestnut Tree House. I think my ‘little tortoise’ is taking her last few brave steps. But whatever happens I know we will have Mel and her colleagues there with us, to help and guide us all through Essie’s final journey.

It costs £35.70 per hour to look after a child like Essie at Chestnut Tree House. 

Please can I ask you to consider making a donation to Chestnut Tree House, so that they can ensure all the other children and families who are so reliant on their support get the care and attention they need. You can make a donation here

Every day is another small step forward for a life-limited child and their family. I want to create a bright, positive Tortoise Trail that will let the hundreds of families like mine – families who rely on Chestnut as we do – know that they are cared for, supported and not alone. And, to help them take another little tortoise step forward in their own lives.

With love and all best wishes to you and your family from all of mine.

Lorna x

You can read more of Lorna’s story here