Please do not send food or drink to Emily

Story written 2020

Emily was diagnosed during pregnancy with severe heart complications. She was born locally but taken to GOSH for surgery after birth. Emily stayed at GOSH until she was 3 months old, when they then estimated she had possibly 48 hours left. Emily was transferred to our local hospital so she could die surrounded by her family. This is where I step in. I am Emily’s second cousin, her Mum is my cousin but she found it difficult to care for Emily. After Emily was transferred home to our local hospital she managed to stabilize but was still given only a few weeks left. The hospital couldn’t keep her there forever and her Mum couldn’t face taking Emily home to die. Social services got involved as expected. They were looking at placing Emily into specialised foster care which could have been anywhere in the UK. I was in a position to have Emily with me so I offered her a home. I didn’t want her to be away from family and I knew it would be difficult but Emily didn’t ask for this life and deserves love and a home. I brought Emily home on 1st August 2017. I was told she may only have a few weeks. As you can see she is still fighting and proving the doctors wrong. I have a special guardianship order for Emily and as far as anyone needs to know she is my daughter and I am her Mumma.

Emily still sees her birth Mum but not Dad. My own 4 children have brought Emily into their hearts. She is their baby sister. Emily has a whole list of medical conditions. Many feel she has Fraser Syndrome but only genetic testing will confirm this and birth mum will not have the test done. Emily is blind but this does not stop her. She is like any other 3 year old, she has tantrums and knows what she wants.

GOSH have concluded that Emily’s heart is too unstable for any further operations. So she is unfortunately terminal and we live day to day. Emily has a lot of urinary/bowel issues which often lead to UTI infections which can make her very poorly. She has been NG tube fed since birth and cannot take food orally. She has medications to help her condition.

Emily is an amazing little girl who has opened up this whole new world to me and made me realise we all just need to love and spend time together. I know I will lose Emily, but at the moment we are blessed with each day that she is here.

Update 8th November 2024

It has been a tricky few months for Emily with various issues. This has resulted in a change of milk feed, the discovery of sciliosis in her back, leg pains, confirmed she has asthma and servere medical anxiety. Emily has had lots of UTI infections which are a constant battle to deal with. We have had lots of appointments to keep on top of all the new issues. Emily had her peg changed to a button and this has been named Rosie.

Emily is doing well at school and has been involved with Great Ormond Street Hospital Charity Team to help promote them.

Emily loved the Post Pal weekend and want to go party with the band again! She deals with everything so well all the time.

Emily loves her Tonie box, storytelling and music. She has her own playlists! She is very inquisitive and want to know everything. She loves going out exploring but is also just as happy to have pj days relaxing at home. Disney and CBeebies are still her favourites.

Update August 2023

Emily had her planned open-heart surgery in January 2022 which was a success (after scary few weeks) and Emily’s heart is now stable and working well. There will more than likely be future heart surgery but hopefully not for a few years. Now that Emily is no longer an anaesthetic high risk, other teams can now be involved to look at her other medical conditions and see if anything can be done to help her. 

Currently the renal team are looking at her kidney/bladder issues and hopefully the gastro team will put her forward for a peg placement. Health wise,  Emily is doing well and continues to thrive.  She is now back at school after months off and loving it. We are hoping the heart working better now will give her more strength to improve her walking and day to day challenges. 

Emily still loves Mr Tumble/Justin and CBeebies. She loves music, sounds, balloons, bubbles, being outside on adventures and stories! Emily doesn’t eat any food and has an allergy to plasters. She dislikes certain textures like sand, squishy toys, wet stuff like paint but school is working with her to encourage her to touch more. Please avoid putting sequins or loose glitter in cards as Emily gets them on her hands (has a meltdown) and could rub her eyes causing discomfort.