Esmé's battle please help

Hi, thank you for visiting our page, I hope you will consider donating to help us give our little one a better future.

When you plan for baby's, you don't plan for all of the things that could go wrong after birth but I wish I could have.

Esmé was born with a bicusbid aortic valve, when we received the news during a 20 week scan that she had a heart disease it was difficult to come to terms with. When she was born we also discovered that she had a hole in her heart which my tiny warrior managed to heal all on her own. She still has a bicusbid valve, and it is life limiting, it will shorten her length of life but it is functioning for now.

At around 12 months I noticed that Esmé wasn't developing the way she was expected to, so we started the process and she's suspected of having autism. It can't be diagnosed yet due to age however all medical professionals, youth vistor, speach and language, portage service, have confirmed autism and at 2 years and 6 months she is still non verbal so isn't able to communicate with others, and that is why she has found this next part particularly distressing.

In November 2022, Esmé started displaying bowel disease like symptoms, but after multiple visits to A&E and GP's they still didn't believe it could be a bowel disease and instead offered explanations of gastritis or lactose intolerance. Her condition rapidly deteriorated after Christmas and she is now in the children's hospital receiving IV antibiotics, steroids, fluids and iron for anemia. An ultrasound scan showed her entire large intestine is inflamed, we were told that you shouldn't even be able to see the intestines at all. Today they had to put a tube into my girls nose down to her stomach so that she can get the right nutrition, she has stopped eating little by little as the pain in her intestines is too much to bare. She's covered in bruises and marks from cannula's and blood tests and is not even half of the happy little girl she once was.

Her dad now has to leave his job to become a full time carer for our little girl who has heart disease, autism, IBD colitis, and thyroid disease. Because of her autism she is very selective with who she allows to feed, change, dress her etc. 

We have four children one of whom we previously fostered but now have parental responsibility for and live in a two bed house. We're hoping to raise money so that we can split the bedrooms upstairs in half (we sleep in the dining room) to give Esmé her own space. We would also like to build a downstairs toilet so that she will always have access to one because given the type of symptoms she suffers from with bowel disease and her sensory issues with autism, it is something she really needs. She will be on immunosuppressants of some form for the majority of her life now which means that all of the bugs and viruses the bigger kids bring home will put her life at risk. She needs her own space to keep her safe.

I am a care leaver myself and so I don't have family and friends to ask for help, I'm also a full time student, my circumstances mean that I'm not in the best position to provide for her extra needs without some help.

If you've read this far, thank you so much, and if you're not able to donate, please send Esmé your love and positive thoughts or share the link with others.

Elizabeth, Esmé's mummy x